Parent's Perspective: What to Pack for the Hospital
One of the most-asked questions by our expecting moms is, "What should I pack for the hospital?!"
In response, we reached out to our experts, the heart parent community, to ask what they found helpful. We've collected their suggestions and created the below checklist in an effort to make packing much less stressful! While the list is geared more towards expecting families, it's really great for anyone facing a hospital stay with their child. The list contains suggested items for baby, parents, siblings and a 2nd page for relocating families. It's in a printable format so you can right-click-save and print a copy when you are ready to start packing!
If there are any items items you found helpful that we have not listed, please let us know and we will keep the list growing!
Happy Packing!
Getting a 2nd Opinion: An Inpatient Perspective
Earlier this week, we shared the story of a family who sought a second opinion for their son while he was outpatient and non-critical. Today, we bring the story of a family who sought a second opinion under completely different circumstances, for their son, who was inpatient and very critical. Thank you, Teri, for sharing Finley's story!
(Teri and Finley)
Hopefully this subject never pertains to your child, but if it does, I hope this post will help you navigate the process easier.
Requesting a second opinion does not mean that you have lost faith in your home hospital and team. Since larger hospitals have a higher volume of patients, they have seen and dealt with more complications and may have ideas your home hospital is unaware of that could help resolve the issue. Unfortunately, our situation was such that we wanted a transfer, not just a second opinion. It is up to you to decide which avenue you wish to seek. Sometimes the second opinion you receive will propose a plan that your home hospital cannot perform and a transfer would be required to implement the plan.
A little background – My name is Teri Chrislip. My son, Finley, is 23 months old and is 13 months post Glenn. He was discharged five days post surgery on a low fat diet with a blake drain due to chylous effusions. They told us that it could take up to six weeks for it to resolve. His surgeon felt we were capable of managing his care at home during this time. We had no idea it would turn into a six month nightmare. Finley was in and out of the hospital multiple times due to electrolyte issues caused by the drainage. Those stays included two caths, one of which turned into an emergency open heart surgery. We finally came to the realization after rushing him to the emergency room with labored breathing which led to another PICU admission that we needed more input. We made a verbal request of our team that day to send his records off to Boston to get a second opinion. He was averaging 30 ounces of drainage a day. Six days later, Finley coded and we made the decision that a second opinion was not enough. We wanted a transfer.
My inner mama bear went in overdrive. I contacted another heart mom to help us seek our own second opinion from Boston because we were not having luck working with our home team. She put us in direct contact via email with Dr. Jim Lock, the head of cardiology in Boston. Thankfully, upon reviewing his file, Dr. Lock felt he could help Finley and wanted him transferred to Boston so he could perform a life saving cath. Because his plan could not be implemented at our home hospital, Finley’s air medical transfer was approved in three days. Dr. Lock performed his cath four days after our arrival in Boston. Within eight weeks of that cath his drains were removed and we have been home for over seven months straight! We are still weaning diuretics, but Finley is doing amazing. He has gained over six pounds and is making huge strides in his development.
Below are the steps I suggest for any parent seeking a second opinion and/or transfer when your child is in critical condition:
1. Pick the hospital you want to seek a second opinion from and contact them directly yourself. If seeking a transfer, I would narrow it down to one hospital. In my opinion, if you do not narrow it down, you could get two different opinions that could hold up the transfer process. If requesting a second opinion only, you could request opinions from several hospitals. Each hospital is a little different on how they handle second opinions and/or transfers. Advise them that you have a critically-ill inpatient child and your needs are very urgent. They will provide you the requirements on what information they need to prepare a second opinion and where to have it sent. Most hospitals will request your most recent echo and cath (on disc) along with recent surgical and inpatient reports. If you do not already have a cardiologist and surgeon in mind, they will likely assign one for this process if it is required. Our home hospital would not send files without them being directed to a specific doctor(s). If you are unsure on who to contact or how, ask your fellow heart moms. Most top hospitals have a dedicated phone number or email address specifically for second opinions. Scour their website; I know Boston has each physician’s email addresses listed.
2. Once you know what you need and where to have it sent, put your request in writing to your current team. This was one of our biggest mistakes. We lost an entire week by starting with a verbal request that was not followed through on. Be sure to include a deadline of when you expect them to have the files sent. We gave them 24 hours due to the extreme critical situation. Just prepare yourself that it could get confrontational. If only asking for a second opinion, some doctors may take it personally. If asking for a transfer, some doctors and hospitals will be worried about being accused of negligence. They may be scared that the new team could find errors they made, simple things they missed, etc. As soon as we notified them of our intentions to transfer, we had more doctors involved in Finley’s care than we had the whole time! The attending cardio had not been in to see Finley for the entire week prior to our request. Trust me, no hospital wants a lawsuit on their hands!
3. Contact your insurance company immediately to see what their requirements are for a transfer. They are pretty hard to get approved, especially air medical transfers. We had a wonderful nurse case manager that helped us facilitate our request. The biggest issue in getting a transfer approved is that the receiving hospital must be proposing a plan that your home hospital cannot implement, and your home hospital must admit that to your insurance company. If not, most insurance companies will not agree to a transfer, suggesting instead that your home hospital implement the plan laid out in the second opinion. If so, you can appeal that your home hospital is not as capable as the proposing hospital and the outcome would not be as favorable which would cause a longer hospital stay. We voiced our unhappiness with our home hospital and the poor care he had received. Also, he had already had several surgeries and lengthy, expensive stays with no results. So in the end, I am sure they justified that the costs to transfer him to a hospital that could hopefully resolve his issue was far less expensive than to continue the path we were already following at our home hospital. As we all know, the insurance company will weigh the costs versus outcome. Your other option is to pay for the transfer yourself, but it is very expensive. Our air medical transfer one way was $36,000 with insurance negotiating the rate to $18,000. You could also check into Angel Flights or other organizations that help with medical transfers. Typically one parent can fly with the child. I flew with Finley and our social worker at our home hospital provided us a prepaid round trip commercial flight for my husband.
4. If transferring, contact the social workers at the hospital where you are transferring about parent lodging and other services available. In Boston, only one parent can sleep in the room with the patient. Since we both were there, we had to make lodging arrangements. We were provided with a sleep room while he was in the CICU. Once he was moved to the floor we had to find other arrangements. Each hospital has different parent lodging available, so check with the social worker on your options. Also, your meals will begin to add up. Be sure to check to see if there is a meal voucher program, especially if you are breastfeeding. It may be only a few dollars a day, but depending on the length of your stay it could be a big help.
Remember, if you are ever in the unfortunate situation of needing a second opinion and/or transfer it is not your fault. Do not be afraid to ask for and accept help from as many people and organizations as you can. Even though we had traveled to Boston for vacation previously it was still scary. We knew the ins and outs of our home hospital and lived only 30 minutes away. Taking a medical flight half away across the country and having our child admitted to a new hospital was overwhelming at first. Just remember, you have been through a lot already and you can do this for your child. Just put one foot in front of the other, one step at a time!
Getting a 2nd Opinion: An Outpatient Perspective
We often hear heart moms asking whether or not they should seek a second opinion. Our response is always the same – even if your child is not critical, if you have any concerns about your child's care, yes, you should definitely seek out a second opinion. With complex CHDers, a second set of eyes never hurts.
In the next two blogposts, we’ll be sharing the stories of two families who sought second opinions for their HLHS children. First is Paxton and his mom, Jessica, who sought an outpatient second opinion leading her across the country for Pax’s Fontan surgery. Jessica shared with us some great insights about what the second opinion process is like when your child is outpatient and not-critical, and how to go about maintaining good relationships with your home care team during the transition.
Thank you, Jessica, for sharing your journey with us!
Jessica and Paxton
Almost six months ago I passed my three-year old son over to a surgical team for his lateral tunnel Fontan at Boston Children’s Hospital. What had started as an information-gathering opinion on my son’s complicated heart and pulmonary structure turned into a 1,800-mile trip from home to the team who has ultimately saved my son's own heart.
A few months prior, I sat listening in disbelief as our “home” cardiologist sprung it on me once again that we were possibly headed down the road of heart transplantation. It had been discussed off and on since Paxton was five days old. Despite having had a dozen heart procedures, many being emergencies, Paxton was thriving with half his heart and a compromised left lung. I asked myself, “How could a child doing so well need a new heart?”
That very day I felt a strong urge in my heart to seek another opinion. I knew I had one chance at my son’s life. It was so hard to tell the team who had saved my son’s life time and time again that I needed more. After all, they became part of our extended family. I apologized repeatedly, but his cardiologist reminded me that Paxton was his baby too, and that he also wanted the very best for him.
Were his feelings a little hurt? Yes. Was his pride a little less? Yes. Did he shed a tear or two as we were leaving? Yes. I truly think it was because he had been working to save Paxton for years. He knew his case well and the thought of someone new inside my son’s chest concerned him. Upon my request, every detail of Paxton’s history was sent to Boston Children’s Hospital for a second opinion.
A top cardiologist at Boston Children’s was selected to review Paxton’s extensive and complicated history. A few weeks later we received the report in the mail that concluded Paxton had received good care at his home hospital and that they would have done nothing differently with his treatment at Boston. That was so reassuring to me because I was not seeking a second opinion to find fault. We did and always will love our home team. But what came next in the report stirred my emotions as a mother of a fragile child whom we had fought so hard to save. A final recommendation of treatment could not be made unless Boston performed a heart cath on Paxton. The report gave me no clear answers. Did my son truly need a new heart? And would my son with a compromised left lung even be eligible for a heart? My heart ached for more answers from one of the very top heart teams in the country. I knew we had to make the trip from Missouri to Boston.
I was at peace the very moment my eyes looked at Boston Children’s Hospital. A sign ran across the entrance to the building that read “Ranked #1 – U.S. News & World Report.” At that moment I realized just how easy and worthwhile the process had been to get a second opinion. What once was just a dream of having my son treated at a top heart center had turned into reality. My fears of getting lost in the crowd at a large heart center were quickly erased. I felt as if my son was their only patient. I felt as if they loved my son even though they had just met him.
As hard as it is for me to admit, there is a difference between good heart centers and the BEST heart centers. The best heart centers have the collective experience to tackle the high-risk cases and are the ones researching new treatment plans that trickle down to smaller heart centers, like our home hospital.
After completing every heart test available, Paxton went in for his pre-Fontan cath. One of the very best interventional cardiologists in the world performed the procedure and advised us that Paxton was a candidate for the Fontan. It would be considered higher than average risk, but she believed it could be done. She advised against heart transplantation.
Paxton had been at risk of sudden catastrophic event since birth. Every procedure up to this point had been high risk when it came to our son. We were not afraid to proceed. The next decision was whether or not to have the surgery performed in Boston.
The fact that my son would have a Fontan to one and a half lungs made the decision to go to Boston easy. At Boston, a team of 75 of the best heart doctors in the world would be surrounding our son, discussing his complex anatomy.
Simply put, Boston offered us more hope and experience. I chose Boston not because our home team was not really good, but rather because for this period in time Paxton’s heart required the very best!
The senior surgeon hand-picked for Paxton’s set of circumstances is in the top 1 percent in his field. He is confident and this brought me so much comfort. Even though I felt uneasy about the unknowns of traveling across the country for a risky surgery that could require a timely hospital stay, I felt such peace in the decision I had made.
Paxton amazed everyone in that he sailed through the Fontan surgery. He was up walking around the CICU with tubes coming out of his body the second day after his surgery. Paxton was back home in Missouri in just one week. Our home team could not believe that Paxton walked through the doors to see them for his post-Fontan check up just one week after boarding a plane for Boston.
All the emotions that our team back home might have felt about seeing him go to Boston all went away after they looked at him. They knew we had made the right decision for our son and they showed so much pride in our success.
Paxton’s home team is still his team. We will never take that away from them. They still love him and are still involved in his care. They are ultimately the ones who gave him his chance at life the first 12 times. It is just that we have now added to our team of lifesavers. Boston Children’s ultimately saved my son’s heart when our home hospital was considering giving up on it.
A recent post-Fontan check up at Boston Children’s proved that Paxton’s very own heart is the best that it can be. We will continue to have them check on Paxton for the years to come simply because they are one of a few heart centers, such as the Children’s Hospital of Philadelphia, that are thinking outside of the box for the future of our HLHS kids.
My husband and I are fortunate to have exceptional health insurance that paid for Paxton’s treatment in Boston. I understand that not every family has the same resources. The second opinion itself was provided at no cost by Boston Children’s Hospital. The same is available for all heart children.
I find comfort and rest knowing that I followed my instinct to get a second opinion and to follow where my heart led my son. I also find comfort in his home team that we still trust for his day-to-day care.
Ultimately, I am my son’s advocate. It is not about sparing feelings and it is nothing personal to seek another opinion. I would do it all over again. Sometimes it is necessary to separate ourselves from the team we love to make sure we are giving our children their best chance at life.
It's February, Celebrate Black History Month!
We know what you're thinking... Black History Month?! It's Congenital Heart Defect Awareness Week, why are you talking about Black History Month?! Well, the answer is simple - because of this brilliant man.
Vivien Theodore Thomas
(August 29, 1910 - November 26, 1985)
Vivien Thomas, the grandson of a slave, was an African-American surgical technician who developed the procedure we all know so well, the Blalock-Taussig Shunt or BT Shunt. Assistant to cardiac surgeon, Alfred Blalock, Vivien performed experiemental surgeries in the animal labratory at Vanderbilt University and Johns Hopkins University.
Thomas created Tetrology of Fallot in canines and then worked at correcting the condition by a pulmonary-to-subclavian anastomosis. The first dog to survive long-term was Anna - whose portrait was hung on the walls of Johns Hopkins. During Dr. Blalock's first BT shunt palliation, on an infant patient, Vivien Thomas stood on a step stool behind Dr. Blalock walking him through each step of the surgery.
With only a high school education, Vivien Thomas suffered through poverty and racism to become a cardiac surgery pioneer and ultimately a teacher of cardiac operative techinque.
In addition to the BT Shunt, Vivien pioneered surgical techniques improving circulation in patients with Transposition of the Great Arteries and the atrial septectomy (also performed for HLHS infants). Vivien's atrial septectomy was so flawless, Dr. Blalock exclaimed in the OR, "Vivien, this looks like something the Lord made."
If you haven't seen the HBO film, Something the Lord Made, we highly recommend it for Heart Awareness Month (or anytime really)! Enter to win a copy of it here!
Vivien Thomas was the first African American without a doctorate to perform open heart surgery on a white patient in the United States. We could go on and on about the life of Vivien Thomas; we owe so much to this man and his contribution to the advancement in HLHS palliative care.
If you want to read more about Vivien Thomas, you might want to grab his autobiography, which he began writing just a few years before he lost his battle with pancreatic cancer. In fact, Partners of the Heart was published two days after his passing.
A Unique Collaboration: SBH and the NPC-QIC
What a special day! Today...February 1, the official "Go Red" Day when we are all wearing Red to honor those affected by Heart Disease and Congenital Heart Defects, Sisters by Heart thought it was particularly fitting to announce a very special joint project we've been working on with the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)!
Several months ago, Sisters by Heart began discussions with the NPC-QIC team about developing a video for HLHS parents, to be viewed prior to discharge from the Norwood, to set their expectations for the interstage period (between the Norwood and Glenn/Hemi) and give them reassurances that they were not alone during that terrifying time. Sisters by Heart took on the project with so much excitement, knowing that we'd have loved to have had something like that when we were discharged with our special babes!
We kept things under wraps, "secretly" doing our filming while on our annual retreat in September...
The NPC-QIC premiered the film at its Learning Session last weekend - and officially "went public" with it today, posting it to their page.
The hope is that this will be a useful tool for members of the Collaborative to use in their discharge planning, to better prepare parents for the interstage period. And, for families at hospitals not in the Collaborative (or in hospitals that are in the Collaborative but who aren't using the video in their discharge process), it will be available on the NPC-QIC's website.
Please go here to find out more about the Collaborative and how parents can become involved!
If you missed our blog post highlighting the Learning Session we attended last weekend, you can read it here.
We were so excited for the opportunity to collaborate in the creation and filming of this video and are proud to be able to finally show it to our families! Please share this and spread the word! Newly discharged families are not alone!
NPC-QIC Winter Learning Session
This past weekend, several members of our Sisters by Heart Board had the honor of attending the winter Learning Session for the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) in Cincinnati, Ohio. Over 40 pediatric heart centers sent representatives from their teams to share and learn from one another in an effort to continue improving the quality of care for HLHS babies between the first and second stage surgeries. Some of the top pediatric cardiologists, and their teams, were in attendance and it was truly an amazing experience to hear their passion for not just saving HLHS babies, but really improving the quality of their lives. The passion and determination exhibited by those in attendance was an inspiring, eye-opening experience; caring for HLHS babies is more than just a job to them. These physicians and team members genuinely care for our special kids and are working together to continue to improve their outcomes.
The Learning Session consisted of two days of intense discussions, speakers presenting information about their current home monitoring programs and inpatient treatment plans and breakout sessions centered around different subjects ranging from partnering with parents to developing ways to pre-plan appointments and actively engage pediatricians as care team members.
Amy, Natasha, Stacey, Stacie and Kathy
The NPC-QIC is currently focused on improving the mortality rate of HLHS infants during the interstage period. Some of their top priorities include improving growth by effectively treating feeding problems, and understanding and preventing readmissions to the hospital during interstage. The implementation of home monitoring programs has proven to be an instrumental tool in managing care for an HLHS interstage baby. Cardiologists are able to closely monitor the progress, or lack of progress, their patients are making by the information parents are recording at home. Parents are armed with interstage equipment (charts, scales, pulse ox machines), information, and emergency plans needed to catch any potential problems at home. Some centers even have Single-Ventricle Clinics, solely dedicated to managing their patients' care between the first and second stage surgeries.
In addition to the physicians and care team members, 15 parents from across the country were in attendance to lend personal experience. Parents were not only invited to attend the conference, but encouraged to participate in discussions, ask questions and answer questions presented by the care teams. Our voices, as parents, matter. Our suggestions are taken to heart and our opinions are evolving the established standards. It was incredible to sit amongst these cardiology teams from across the country and see firsthand their eagerness to ask question after question to understand the parental point of view.
Attending the Learning Session was such an incredible experience and we are thrilled to have the opportunity to be involved in their mission. We all left feeling inspired by the passion that permeated throughout that conference room. Speaking of inspiration ...a couple of us had a chance to meet Meg Roswick, a 21-year old HLHSer, who is truly living her life to the fullest. She and her mom, Patty, are like celebrities in the HLHS community. Such an inspiration to us parents! Some of us are told after diagnosis that our HLHSers will never be able to play sports. Patty raised Meg to not let her HLHS define her and let her live like a "normal" kid. Meg found her passion for gymnastics when she was just a toddler and now she is a competitive gymnast who loves extreme sports and is even training for a half-marathon! She's in college and studying bio genetics. Meg and Patty are both amazing and give us so much HOPE for the future of our kids. Thank you Meg and Patty for coming out to meet us and continuing to inspire heart parents across the country by sharing your journey and opening your hearts to us!
Stacie, Stacey, Meg & Patty
It is obvious from our experiences this weekend that working as a team (cardios, nurses, pediatricians, dietitians parents, etc.) can greatly improve the challenging interstage period. The feedback parents received from the cardiac teams following the Learning Session was extremely encouraging and uplifting. We're look forward to participating in the next NPC-QIC learning session, scheduled for September 27 and 28, 2013 to continue with this mission.
If you're a parent or caregiver of an HLHS child, or child requiring the Norwood and Glenn/Hemi, and would like to become involved in the cardiology improvement collaborative, please visit https://jcchdqi.org/ for more information.
To follow in Meg's journey and learn more about her, feel free to visit her Facebook Page!
* No donations or Sisters by Heart funds were used for attendees travel expenses.
A Heartfelt Donation: Smart Mom Jewelry
Sisters by Heart loves to hear about products that help BOTH our special heart babies and their amazing mothers. We're even more excited when we are able to include these products in our care packages. So, you can imagine we were over-the-moon when we were approached about a donation of "Teething Bling," beautiful teething necklaces created by Smart Mom Jewelry.
Teething Bling® is the original teething jewelry, made from the same FDA-approved material as most teething toys. The pendants and bangles look great on mom and are safe for curious babies to handle and chew.
For the month of March 2013, Sisters by Heart is teaming up with Smart Mom to raise awarness for Congenital Heart Defects and would love to hear your CHD story. Please share your story with us at info@smartmomjewelry.com for a chance to win the beautiful heart pendant shown below!
A big thanks to our fellow heart mom Jackie, mom to this adorable CHDer, Zoey...
..who approached Smart Mom Jewelry about CHD and pulse oximetry awareness...and came away with an incredible donation of these beautiful teething necklaces for our care packages!
Amy Creel, founder of Smart Mom Jewelry, is committed to continuing to support and donate to Sisters by Heart! We are absolutely blown away and know our moms will be as well!
Like so many of our donors, Amy's reasons for donating are very personal. The loss of her sister-in-law, Maria, ignites her ongoing passion to give back to others. Amy's allowed us to share Maria's story with you...
"My sister-in-law - Maria Jankowski Maurer - died suddenly in 2006 of an undiagnosed and untreated CHD.
Maria was an accomplished artist and designer at Eileen Fisher. Because of her love of fashion and interest in women's issues, Smart Mom Jewelry supports great causes like Dress for Success in her memory. The mission of Dress for Success is to promote the economic independence of disadvantaged women by providing professional attire, a network of support and the career development tools to help women thrive in work and in life. We hope it is a fitting tribute."
We're pleased to be yet another organization that Amy is inspired by - through the many moms and infants we serve on a daily basis.
Thank you so much Jackie, Amy and Smart Mom Jewelry for your generosity in partnering with us to spread the gift of HOPE to newly diagnosed HLHS families!
Heartfelt Donations: aden + anais and The Dorsett Family
Our heart community has suffered more devastating losses this year. It's heart-wrenching to watch a fellow HLHS family say goodbye to their little warrior. With each loss, we are painfully reminded of the battle our children are fighting every single day. Each of our angel warriors holds a special place in our broken hearts. It's tragic and unfair that they can no longer be here on this earth with us and in the arms of their Mothers.
One of our HLHS warriors, Hayden Jeter Dorsett, earned his angel wings at just 5 months old. This sweet, beautiful baby boy with his big blue eyes, an infectious smile and adorable red hair would brighten our day when his Mom, Ady, would post precious pictures of him. You couldn't help but fall in love with the Dorsett family. When the news of his loss spread throughout our heart community, we all sobbed uncontrollably as we do every time we lose one of our own. The Dorsett family received an outpouring of support from family, friends, the heart community and even complete strangers. Thousands of people were touched by sweet Hayden in his short life.
Ady contacted Sisters by Heart shortly after his passing to offer a special product donation for our care packages in honor of Hayden. The nurses who cared for Hayden oohed and ahhed over him and the gorgeous aden + anais Swaddle Blankets he was always wrapped in. Hayden quickly became known for these blankets and it was rare to not see him swaddled in or sleeping soundly on one. Swaddling is extra comforting to our heart babies because we can't always hold them. Wires, tubes and med lines prevent us from snuggling our babies far too often in those first few weeks of life. Ady wanted the babies receiving SBH care packages to have their very own assortment of aden + anais Swaddle Blankets. She contacted them directly to see if they would allow her to purchase wholesale. Astonishingly, aden + anais responded saying they were so touched by Hayden that they would donate 104 (4)pks of swaddle blankets! Along with Ady, they also loved the idea of having our newborns wrapped in the comfort of their swaddle blankets in honor of sweet Hayden. More amazing yet, the Dorsetts offered to provide the aden + anais blankets after the donated supply runs out to continue honoring Hayden by helping as many families as possible.
Not only is baby Hayden watching over our heart warriors, he is now keeping them safe and comforted when they can't be in their parents' arms, neatly tucked into an aden + anais Swaddle Blanket and embraced in a sweet angel hug from Hayden.
"Angels are the guardians of hope and wonder, the keepers of magic and dreams." ~Unknown
Thank you aden + anais for your extremely generous donation of swaddle blankets in memory of Hayden. What a beautiful contribution to our care packages. We are truly grateful and honored to be able to provide these blankets to our newly diagnosed families.
And thank you Ady & Rob Doresett for your support to Sisters by Heart and sharing Hayden's journey with us. Hayden will always be a part of our SBH family and be forever missed. His memory will live on in our hearts and his life will continue to be celebrated through our care packages. Sending much love to you, Rob and Jackson today and always.
If you are as touched as we by the generosity and kindness of aden + anais, or are interested in their products, you can check out their full line on their website or send them some love on their Facebook page. They also offer some helpful tips here on how to help your newborn get a good night's sleep.
To read Hayden's story, or send the Dorsetts some love and prayers, you can visit Hayden's blog or Prayer Page for Baby Hayden on Facebook.
Want to share a picture of your newborn in a aden + anais swaddle blanket, or using other much-loved care package items? We would love to see them! Feel free to post on our Facebook wall or send via email to: info@sistersbyheart.org.
Gifts from the Heart: Stella & Dot
Sisters by Heart is thrilled to announce a wonderful opportunity to jump-start your holiday shopping, support our mission and celebrate our Second Anniversary - all at the same time!
Sisters by Heart teamed with Diane Gates, RN in the Cardiac ICU at Seattle Children’s Hospital and Independent Stylist for Stella & Dot, after Diane inquired about hosting a trunk show to benefit our mission. In addition to donating 100% of her proceeds from the LOVE and COURAGE bracelets to SBH, Diane opened up her entire online trunk collection, offering SBH 50% of the proceeds from those sales as well! Diane's trunk show sale is available today through December 5th. You can access the sale here!
If you'd like to purchase one for yourself or are searching for a great holiday gift for family, friends, your favorite cardiac nurse, cardiologist or therapist, now is a great time to do so! We've made special gift tags if you're giving the LOVE or COURAGE bracelets, so feel free to download the PDF below (open in a new window to print it) to include in your gift to show the thoughtfulness this gift brings.
And, of course, we asked Diane to share some of her story and her inspiration with us...
This is a privilege for me.
As an ICU nurse in the Cardiac Intensive Care unit, taking care of families whose children have been diagnosed with HLHS has been part of my life. I have been with many families over the years during the ups, the downs, the struggles, the victories, the laughter and the tears.
About 10 months ago, I also became a Stella & Dot stylist. Having never really been into jewelry before, I found myself pretty smitten with it. It’s beautiful. But more than anything, I became a stylist because I am a ‘connector’ by nature and I found that the company and the jewelry connected more than the links of its pieces… it connected people.
I don’t think it was totally by chance that I met Sara Hale (an SBH Board member) at one of the jewelry parties. As she shared some of her experiences with her own son, Townsend, and her passion for her organization, Sisters By Heart, I immediately sensed an opportunity to make a difference for something that as a nurse was close to my heart as well. Sara and I emailed back and forth as we figured out the details. We chose the Love and Courage bracelets because it is exactly that, love and courage, that is the essence of every family's journey.
Now through December 5th, I will be donating 100% of my commissions for these two bracelets to Sisters by Heart. In addition, I will be donating 50% of my commissions for any of the other items ordered. All orders will be received in time for the holiday season!
Thank you very much in advance for your support. It is my hope that when you, your friends or your family members wear these bracelets, that you feel the connection to this very special cause.
~ Thank you so much Diane, for your heart, your dedication to our families and for your generosity to Sisters by Heart!
Note: the bracelets are currently on back order; however, our wonderful Stella & Dot rep assures us that they will ship on 11/30 and arrive to you in plenty of time for Christmas!
Creative Donors: United Way Workplace Campaigns
Sisters by Heart sent out 100 care packages in its first year. We doubled that during the following 9 months, and are on track to send out over 300 next year! There is no doubt that there are a lot of families in desperate need of the HOPE that Sisters by Heart provides. Our growth has been astounding. Along with growth comes new challenges; mainly, how to fund that growth. So you could say that fundraising is at the forefront of all of our minds right now!
One of the easiest and most effective ways we've been able to raise funds is through Workplace Campaigns. Workplace Campaigns are fantastic, because they allow an employee to have a small amount withdrawn from their paychecks; the amount is small enough the employee hardly notices the reduction in income, but it can add up to a sizeable donation to a charity over the course of a year. And the contribution is completely tax deductible to the employee.
Did you know that you can contribute to Sisters by Heart through the United Way? Many employers do United Way Workplace Campaigns, and almost all United Way Chapters allow you to designate your funding for any 501(c)(3) who meets basic criteria (the criteria varies from chapter to chapter, but Sisters by Heart has met every criteria we've seen thus far).
If your employer does a Workplace Campaign that allows for designated funds (most do - sometimes you have to ask, but there's typically a space for it right on the form!), you can have a payroll deduction made to United Way and you can designate it for Sisters by Heart! On your enrollment form, simply list 'Sisters by Heart' and the contact information requested.
(The forms vary from chapter to chapter - this is from the United Way of Greater Los Angeles.)
Yes, it's THAT easy. We had two donors contribute that way last year and already have one signed up for next year! We know this is the time of year United Way forms are due for Workplace Campaigns, so if your employer participates, please ask about contributing to Sisters by Heart!
Even better, ask whether your employer matches! Many do! This is such a simple way to give the gift of HOPE to so many families!
If you have any questions or would like to find out more about the UW Workplace campaign, please contact our Secretary/Treasurer, Amy Bennett, at amy@sistersbyheart.org.
A Mother's Perspective: Healing a Hurting Marriage
Any parent who has a medically fragile child will tell you that it can (and often is) challenging to all relationships in your life, but perhaps most especially, your relationship with your mate. One of our Board members blogged about this subject recently, and received quite a response from members of the heart community. Her writing is insightful and we wanted to share it here. This is the first writing in the series. You can see the rest of the series at www.hopeforbabybennett.com. Thank you, Amy, for sharing your story with us!
Hope for Baby Bennett: Healing a Hurting Marriage: Part 1. The Backstory
Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart surgeries, can put an unbelievable amount of stress on a marriage. Before your diagnosis, it’s like your life is a nice tiny little ball of neatness (for the most part). Then, you get your diagnosis and the ball gets thrown in the air and completely explodes. Then, until your baby is born and for the first 6 months to a year of your child’s life (sometimes longer, depending on your child’s complications), you’re trying like mad to keep the pieces in the air as much as you can. You’re trying to keep things from hitting the ground. And you’re so busy trying to keep the important pieces (you know, keeping your kid alive) up in the air, you’re pretty much ignoring the unimportant ones. You’re making spur of the moment decisions on what’s unimportant enough to hit the ground.
Then, once things settle down, and you’re far enough past the Glenn that the surgical experience starts to fade and the Fontan seems light years away, you finally have some time to look around and examine all of the pieces of your formerly tidy little ball of a life. Some pieces are bent, some are broken, some are just flat out missing. Where’d they go? God only knows – you were too busy juggling the other pieces to notice. And you try to scoop everything up into that tidy little ball again, desperate for order amidst the chaos. This is what I lovingly refer to as “post-Glenn Fallout” period.
You have to spend time getting to know this new life, this new “normal.” Maybe you allow yourself to process the grief – maybe you don’t. After all, your child is thriving, so what right do you have to feel any sense of grief? In so many ways, this life is SO MUCH better than the life you had expected. But it’s still different. And you can’t ignore the ways it’s different. And, as tempting as it is, you can’t ignore its effect on your marriage or relationship.
When we were first diagnosed, we met another family whose little boy was gearing up for his Fontan. They were such a loving family – the mom and dad were both so supportive of their sweet little boy. But my mom told me later that the dad pulled her aside and said his biggest advice was NOT to ignore our marriage during that first year of our baby’s life, that it could have devastating consequences, that that was his one big regret. His son survived the Fontan with flying colors. Their marriage did not. And they are just one story. So many, many families have similar stories to tell.
So, when we realized that we were allowing ourselves to drift complacently through this “Post-Glenn Fallout” period, and we were pulling apart instead of together, remembering that family, and so many others like them, we sought out a pastoral counselor, a trusted and loving confidant who knew us, and our family. Someone who could help us navigate through this next stage in life, and pull back together into a cohesive unit.
It has been amazing. One of the best decisions we’ve made. We’re already making such good progress – toward one another, for the first time in years, instead of away. What a wonderful relief.
One of the first “assignments” from him was to write Bodie’s story. We looked at one another and said “sure, we have his medical history already written up.” He stopped us and said “No, I don’t want BODIE’S story. I want to hear how Bodie’s story has affected AMY. And how Bodie’s story has affected DUSK.” Interesting. He also asked us to write about what we’ve learned and about our celebrations and accomplishments. We talked a lot about celebrating milestones. And I realized that although we have been very good at celebrating how far BODIE has come in this journey, we have NOT been very good at celebrating how far the REST OF US have come – Dusk, me, Sierra, our marriage, and our family.
We protested a bit – it feels weird to celebrate how far we’ve come when we still have so far to go. Wouldn’t we be somehow jinxing things? But he gently reminded me that, much like soldiers at war, just because we know we have another tour of duty coming up does NOT mean we don’t celebrate each homecoming from a tour. So, in the next few blogposts, I will be sharing both Dusk and my writings of celebration, and our trip this last weekend, our first weekend away together since before Sierra was born!
A Gift for Our Fighters
We call our heart kiddos fighters, warriors, heroes, HLHS butt-kickers...because they are the strongest, bravest, most-determined people we know. From the moment they are born, they begin fighting a battle that we ourselves, as adults, would find nearly impossible to face. For us, their battle begins the day we receive the devastating diagnosis. We become strong for them and continue to fight with hope in our hearts for their future.
Our kids are inspiring and continue to amaze us every single day. Our lives are forever changed by their heart journeys. We see the world differently and appreciate every single minute we have with them. We love to share their stories because we are SO proud of them for everything they have endured in their first few months and years of life. Their half hearts make our families whole and we love them unconditionally.
I (Stacie Jackley) recently had the opportunity to honor my little figher, Kellen, with a song written and fully produced for him appropriately titled "Half a Heart." My cousin, Tyler, is a multi-talented musician & professional recording artist and a member of Gym Class Heroes since 2005. He plays the keyboard, guitar, does backup vocals and wrote many of their songs - an incredibly talented kid.
Tyler is the second from the left
When I first heard this song, I sat there stunned with tears streaming down my face. It's not just about Kellen, it's about all of our HLHSers. Their fight, the pain, the hope... In listening to the lyrics, you would think Tyler is the father of a heart child. It's so beautifully written and heartfelt. I wanted to share this song with all of you, as a gift for your HLHSers. I truly hope you enjoy it as much as I do.
Thank you Tyler for sharing your talents with us and giving Kellen and his friends such a priceless gift that we can cherish forever! You are amazing.
Want a chance to have your own personalized song for your HLHSer? Enter our 2nd Annual SBH Costume contest! We will be accepting entries until 11/4. The album will be posted on 11/5 and the voting will begin! The Halloween cutie with the most "likes" will win their own song written and produced by Tyler! How cool is that?!
Stories of Hope: Tyler Sajdak
Meet Ty - All Boy, All Sport
Hello, my name is Tyler Sajdak. I was born with the congenital heart defect Hypoplastic Left Heart Syndrome in Grand Rapids, MI on September 18 of 1993. Six days after I was born I was taken to Ann Arbor, MI, for my first of three open-heart surgeries. Dr. Edward Bove was the surgeon who performed my surgeries at the University of Michigan hospitals.
I grew up feeling like a normal kid. My parents, as best they could, treated my siblings and I as evenly as they could. They never wanted me to feel like I was more or less special then my siblings were. My dad, his brothers and my older brother got me into sports, especially baseball, at a really early age. My uncle gave all of my siblings ping-pong balls when we were little so we could throw them and get used to holding a ball, something my two brothers and I did frequently. When we were little, we would always either be outside throwing a baseball or football or trying to beat each other in sports video games.
During my early elementary years, I started playing organized sports. I played rec league baseball and soccer while I lived in Orange City, IA, and I started play little league baseball and rec league flag football when I moved to Pella, IA. I always felt like I was one of the better players on both the baseball diamond and football field. I played shortstop and pitcher in little league, and I even threw a no-hitter. In flag football, I played quarterback on offense, and I tried to get my coach to let me play middle linebacker on defense, but I rarely played defense because “you don’t want to get your quarterback hurt”. During my 6th grade flag football season I led my team to an undefeated season, 6-0.
During middle school I stopped playing organized football and joined the school soccer team instead. I was the goalkeeper on my 7th and 8th grade teams. That is when I started to like soccer as a pro sport. I am an avid Chelsea FC fan because of my two years as a goalkeeper in middle school.
I started playing high school baseball my 8th grade year. That is when I moved to catcher. I absolutely loved playing catcher. I think it is a great position for anyone with HLHS to play. It doesn’t involve that much running and you are in on every single play. I only played until my sophomore year, but it is still my favorite sport to play.
I took up tennis when I started high school. My older brother was a senior on the tennis team when I started playing. He was the reason I started playing tennis. My dad had convinced my older brother to play tennis, and in the process convinced me to play too.
Now that I am in college, I haven’t had that much time to continue playing sports. I will toss around a football with some of my friends every now and then, but I didn’t join any of the school’s sports teams. I am planning on joining a slow pitch softball team in the spring just to keep my energy level and my love of sports “up to date."
I hope this has helped all of you. If you have any other questions you would like to ask me about my experiences in sports or any other sphere of life. don’t hesitate to ask.
Thank you Ty, for sharing your journey and experiences as a young boy growing into adulthood. Many of us, at the beginning of this journey with HLHS, wonder if our children (boys and girls) will be able to take part in athletics. Thank you for showing us that not only can they participate, but can really enjoy playing sports!
A Heartfelt Donation: The Mended Heart
How cute is this kimono? Adorable, right? And not to mention, so so practical for our heart babes - completely compatible with tubes, wires, and even the MRI machine!
Well, we’re excited to introduce you to one of our newest partners here at Sisters by Heart! Hospital gowns have long been a staple in our care packages (generously donated by EZ Axcess, Inc.), but when our demand far exceeded our supply, we knew we had to look to find an additional partner in this endeavor. We were beyond thrilled to happen upon Lara and her awesome shop, The Mended Heart. We had to order both girl...
and boy kimonos.
As soon as we received them, we were hooked! Lara has now partnered with Sisters by Heart to provide these adorable gowns at a deep discount, and we are SO grateful for both her talent and her generosity!
We asked Lara to share a little about how The Mended Heart was started…
“On September 1st, 2011, my youngest daughter, Mylah, was diagnosed with a CHD known as Tetralogy of Fallot. I was 34 weeks pregnant and shocked to hear the news. My husband and I learned all we could about her defect and prepared ourselves for life with a heart baby.
Born four weeks later, Mylah was healthy and very pink. She had her first OHS at five days old and it was a success. Mylah came home and gained weight and grew as she should.
At six months old on April 25th, 2012, she had her full heart repair. During that hospital stay she wore some adorable hospital gowns that her Grandmother made. Everyone commented and just couldn't get enough of them! That's when The Mended Heart really took off. I knew I needed to make more to share with other heart babies and families. I wanted to create awareness but also create something in Mylah's name. The Mended Heart has been a beautiful creative outlet for me and has helped me emotionally to deal with all I've had to after Mylah's diagnosis. It has grown and become a success for me. I am so excited to be partnered with Sisters by Heart and create awareness and help heart families!”
Thank you again, Lara, for partnering with us to bring adorable gowns to our families!
And, if you're as hooked as we were as soon as we saw them, you can check out more gowns and other CHD products at Lara's store, at The Mended Heart!
Fun in the Sun: Year Two
Last weekend, for the second year in a row, Sisters by Heart had its annual Board retreat in sunny Palm Springs, CA! We had an amazing weekend of bonding, brainstorming and planning for the year ahead. A super secret special project (that we can't wait to tell you about!).And lots (and lots and lots) of care package prepping. We'd like to extend a special thank-you to the Gerrish family for allowing us to use their beautiful home for the second year in a row. Thank you Gerrishes!
* Retreat soley funded by individuals, no donations or Sisters by Heart funds were used.
Creative Moms: Warrior Scrapbooking
A few weeks ago, we heard from one of our recipient moms, Sarah. Her daughter, Cecilia is inpatient and working diligiently on feeding in order to return home following her Norwood. Sadly, Sarah is not able to be at Cecilia's bedside 24/7 as her other children (5 adorable girls total) need her love and comfort as well.
To help ease some of Sarah's pain, she created a "Heart Friends" scrapbook for Cecilia - so she'd know she's never alone. It's true, Cecilia has many heart friends cheering her on. Sisters by Heart loved this idea and invited Sarah to share her creativity with you, along with some photos of Cecilia's book.
Getting Crafty with Sarah:
As a Heart Mom, we turn to each other for advice, support, and reassurance that we are not alone. We have places in our hearts reserved for each Warrior and Angel, and root for them just as hard as we do for our own child.
I wanted to make something for my HLHS fighter, Cecilia, to share stories of hope with her. And so, I came up with a scrapbooking project and included all of our "Heart Friends." As my intention began for Cecilia to find comfort in this scrapbook, it also served a purpose in bringing myself extra comfort. Creating Cecilia's Heart Friends book became a major coping tool for me, reminding me we are not alone, and as well reinforcing hope.
In this journey most of us will face depression or have trouble accepting that there is nothing we can do to fix our child's heart defect. Sometimes to keep us getting through the moment, it helps to focus on the Warriors who are thriving. It can be hard to watch your fighter with uncertainty, not able to let go and trust that they will progress and become another face of HOPE ♥. All of us need to focus, however we can, and stay positive. Heart Friends allowed me to stay focused and positive!
Whether you are crafty or not, and want to make a scrapbook, it can be a costly hobby. I often use non traditional embellishments, such as broken/unused jewelry, torn pages from old books, lace and trimming from old clothing, ect. You can find a large amount of tips here http://www.scrapbook.com/tips.php and I encourage you to browse through Layout Galleries for ideas and inspiration here http://www.scrapbook.com/gallery/?type=layout&f=1
Some of the pages I created for Cecilia's book follow - all HLHS warriors who've provided me with incredible amounts of HOPE.
I wish all of you the best of luck in your Journey. Cecilia and I will be rooting for you! ♥
~ Sarah, Mom to Cecilia (HLHS, 1 month old)
Thank you so much, Sarah, for sharing your creativity and incredible Heart Friends book with all of us. It's certainly something Cecilia will cherish for many years to come!
Remembering Our Heroes
As we approach the 11th anniversary of the attack on the World Trade Center, and honor the lives lost that day, we wanted to share a special story relayed to us; a story of a hero lost that day, and a very special HLHSer who lives on in his memory. Thank you Lauren for sharing your story!
Jack Foley at the Brooklyn Wall of Remembrance
"On September 11, 2001, my family was changed forever. My brother, FDNY FF Michael Kiefer, was one of the brave 343 firefighters who died a hero at The World Trade Center. Michael was only 25 years old when he was so violently taken from us. His life long dream was to be a FDNY Firefighter. After lots of hard work and determination, he graduated at the very top of his class. His dream was cut short after only nine months on the job when he answered his final call on September 11, 2001.
Ever since than our family has not been the same. Michael was the core of our family. He was an amazing big brother to my sister Kerri and I, and a loving son to our parents, Pat and Bud. Family was extremely important to Michael so when my sister and I were both expecting our first children together (we were due 11 weeks apart) it broke our hearts to know that our babies would grow up without their Uncle Michael.
When I first found out I was pregnant, I prayed to my brother everyday to watch over our baby. Michael's faith was very important to him. My 20 week sonogram was scheduled for the week after my brother's birthday. Being a believer in "signs," I took the timing of our sonogram as a sign that Michael would be with us. I remember sitting in the waiting room having a "not good" feeling. I reminded the technician numerous times that we did not want to know the sex of the baby. As the test went on I could tell that something was not right, the tech was very quiet. We were told that something was wrong with our baby's heart. I was so sure that they were wrong. After some other tests it was determined that our baby had Hypoplastic Left Heart Syndrome. I literally wanted to throw up when they told me exactly what it was and the prognosis for our child. From that moment on I think I spoke to my brother every second of every day and begged him to watch over his niece or nephew. The next few month were long and hard not knowing what would be.
Our son, Jack Michael, was born at Morgan Stanley Children's Hospital of Columbia Presbyterian on April 25, 2011. He was absolutely perfect! Looking at him you would never know he only had half a heart! Jack had his Norwood at four days old. I remember the morning of his surgery, my husband Rob and I came up from my room and we looked at Jack's monitor just like we always did when we came to his side. His heart rate read 132. I began to cry immediately! My brother was in Ladder Company 132 on 9/11! As I walked the hallway to Jack's side that morning I begged Michael to be with him during surgery. I got my sign with his heart rate reading! It had never read that before that I had noticed so to me that was Michael letting me know he was with Jack! Surgery went amazing and he recovered quickly and we were home a week and a half after surgery! Jack had his Glenn at 4 1/2 months old and once again he did amazing! We were home four days after surgery.
Thankfully, Jack continues to defy the odds and is doing well! I have no doubt that Michael is with Jack every step of his journey. I like to believe that Jack and Michael had a little talk up in Heaven before he came to us. Michael let him know that he was going to have to be strong and I believe he gave Jack a lot of his strength! Just the other night my mom innocently asked Jack "where do you get your strength from?" He immediately pointed to my brother's picture! It was the first time anyone asked him that question and with his response tears ran down my face! Jack and my nephew, Michael Anthony, know their uncle so well and it makes us all so happy! The picture above was taken at The Brooklyn Wall of Remembrance in Coney Island, NY. We took Jack there and he found his Uncle Michael's picture and lovingly pointed to it and then blew him a kiss. Michael may not be here physically on earth but his memory will live on forever. His nephews will grow up knowing how much their uncle loves them. Jack's journey is a very scary and long one but I know he has the very best Guardian Angel watching over him! Please never forget the sacrifices made on September 11, 2001!"
~Lauren Keifer, mom to HLHSer Jack Michael Kiefer
Thank you again Lauren, for sharing this heartwarming picture of Jack and the story of your brother; two amazing, inspiring heroes.
Top Ten (or 14) Discharge List
This past week, via our Facebook page, we requested feedback from HLHS families to assist us in preparing a Top Ten Discharge List we feel is necessary following birth and the Norwood operation. We received great feedback from moms and dads across the nation.
The information received was compiled into the following list, shared this past weekend at the JCCHD's Semi-Annual National Pediatric Cardiology - Quality Improvement Collaborative Conference. The Conference attendants included pediatric cardiac teams from across the country. The teams thoroughly appreciated our insights and loved the Top Ten List, which turned out to be "Top Ten" - plus a few necessary extras which we couldn't allow to go by the wayside.
Since so many of you provided input, we wanted to share the finalized list with you. Feel free, particularly new families and those soon-to-be-discharged, to print out the following list and go over it with your health care team.
Discharge: The Top Ten Things You Can Do to Best Prepare a Parent for Interstage
1. All parents should be armed with an interstage monitoring program and the necessary supplies for interstage care and monitoring: Pulse ox machine, infant scale, care binder or dedicated pages to record specific information (BP/Sats/Weight/intake, meds given, etc.). Most interstage parents feel that all of these supplies are necessary tools that help parents track changes and concerns during the interstage period. “Interstage monitoring” training should begin in the step-down unit so parents can get the hang of it for a few days prior to discharge.
2. Provide the parent a medication chart with dosage/administration directions, a proposed medication schedule and medication precautions list. The provided chart and schedule helps to eliminate parental anxiety regarding medication administration. Be certain parents know where they can obtain compounded medications before leaving the hospital. If the hospital pharmacy can provide a supply of oral syringes and caps, parents would be very appreciative.
3. Provide a nutrition and feeding schedule and contact information for a nutritionist/dietician when questions regarding feeding arise. Feeding issues occur over and over for interstage parents and we feel that a dedicated nutritionist/provider would greatly benefit our infants.
4. Recommended guidelines regarding exposure to outside risks (hand washing, sanitizing, visitors, etc.)
5. One-page handout delineating signs/symptoms of known complications along with contact information for a cardiologist or cardiac nurse practitioner which may be used at any time (24/7) for emergent situations. Additionally, provide an email address for this same provider for non-urgent questions and concerns. Parents feel like they are on a deserted island once home with their fragile HLHSer. Knowing that you have a trained professional to contact 24/7 is a must for interstage parents.
6. Infant CPR education and training along with infant CPR instructions to post on the refrigerator at home.
7. Handouts regarding sternal care, scar and infant massage and physical therapy that can be done in-home by the parent during the interstage period. These modalities provide a way in which parents feel they can take control over their uncontrollable situation. Giving parents something they can “do” to help their infant is a simple and easy gift that cardiac centers can give a parent.
8. Talk to your parents! Be certain they realize what being an interstage parent means – they will essentially be a nurse/doctor without a degree during those interstage months. Interstage is very much an isolating 4-plus months, which is “normal” for interstage families. There are tools provided by non-profits to find other interstage families. Encourage your families to check out Linked by Heart (www.linked-by-heart.org). Encourage them to reach out to others in similar situations to help ease the burden, gain a sense of community and diminish the sense of isolation.
9. Advise parents about REFLUX and that it is extremely common. What are the signs of reflux? Can dosages be increased? Can you order a change in reflux medications if one reflux med is not effective after a month or two? Provide tips on how to counteract reflux or avoid flare-ups.
10. Allow parents to TRUST THEIR OWN INSTINCTS. No question or concern is too small at this critical time. We’ve been given the task to keep an extremely fragile infant alive for several months and we want to be empowered with our “gut instincts.” Many times, the parent’s gut is accurate and we want to know you are listening to our thoughts and concerns.
Other areas of importance to an interstage parent:
11. Is there a communication plan between the treating cardiologist and pediatrician?
12. Social work can play a larger role in most centers to help parents prepare for interstage. Is insurance coordinated with supply companies, are parents set up with a compounding pharmacy, are there programs (WIC, Medicaid, Early Intervention) that can be applied for/set up prior to discharge, etc.? All of these things are horribly burdensome for a parent to figure out while they’re extremely anxious and doing all they can to keep their child alive.
13. Advise parents not to compare their child to another HLHS infant. All of these children come with their own complications and set of circumstances. This is often easier said than done, but a reminder prior to discharge is extremely helpful, especially when coming from a medical professional.
14. A pre-discharge meeting with child’s surgeon or cardiologist to explain the Norwood/hybrid, draw diagrams of their child’s heart post-op and explain what took place during surgery. Often, we are in such shock pre-operatively that we only retain half of what is stated. Each parent should have a good understanding of their child’s cardiac anatomy and their child’s baseline saturations and heart rate. This is particularly helpful if the infant was not prenatally diagnosed.
An additional item currently being developed by the Collaborative (which we all think is great), is the Patient Information Instruction Card. This card, or something bearing similar information, can be kept in your purse or wallet in case of emergencies. It's a simple tool that allows emergency providers the pertinent information they may need to assess your HLHS interstage infant (i.e. your child's typical blood pressure, saturations, known complications and medications).
Thanks again to those who contributed to this Top Ten List and who continue to support Sisters by Heart and work with us to improve the landscape for HLHS infants and children.