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A major component of our mission at The Heart of MFB is to provide awareness of congenital heart defects.

Folks in the CHD community know that congenital heart defects do not just impact the patient; it also affects the entire family unit. We have collected some stories from other families who are impacted by congenital heart defects.

If you are willing to share how CHD has impacted your family or yourself personally, we would love to hear your story. Submissions can be sent to sarah@theheartofmfb.org.

Thank you for helping us build awareness of CHD!

Peter’s Story

In August, 2018, we welcomed our third baby, Peter. However, we were abruptly faced with what would become the most challenging and uncharted journeys of our lives. When Peter was one day old, he was diagnosed with a congenital heart defect, bicuspid aortic valve disease. We were shocked and dismayed, as parents to Peter’s two healthy, typically-developing siblings, and never expected that this baby would have a birth defect. He was promptly transferred to Children’s Mercy Hospital in Kansas City, which was about three hours away from our home. Peter underwent a repair to his bicuspid aortic valve with a catheter and a balloon at four days old. Sending our newborn to the cath lab was the scariest thing we had faced as parents up to that point. Nevertheless, the repair went beautifully and we expected to go home within a week! While the thought of our little guy spending seven more days in the NICU felt nearly unbearable, we were reassured that circumstances were looking sunnier for Peter.

Unfortunately, Peter developed an infection ended up sticking around the NICU to complete a three-week course of IV antibiotics. This was hard news, but still, we had a go-home date, and I consoled myself that I would still have time to spend with my last baby at home before my maternity leave was over. However, a few days before we were slated to take our now-three-and-a-half-week-old baby home, a routine echo revealed that the infection had seriously damaged his newly-repaired aortic valve and created an aneurysm on his aorta. We moved into the PICU (Pediatric Intensive Care Unit) that day with the grim news

that Peter had a big battle ahead of him. And this was the most scared we had been as parents.

One thing was clear: Peter required open-heart surgery at some point to repair the damage to his heart. Our team conferred extensively and recommended surgery the following Monday, just four days after our move to the PICU. While Peter could not continue with his heart the way it was, the surgery was risky; our surgeon shared that he estimated Peter had a less than 50/50 chance of surviving surgery. Our medical team urged us to gather our family and spend time together before surgery. Up to that point, Peter had not required oxygen or more than one IV access point. Now, to reduce the workload on his heart, he was intubated and sedated. We pondered on how to explain this to our older children and fretted over how they would respond to seeing their little brother in this unnatural, heartbreaking setting. While we were overwhelmed by the machines, busyness, and noise, it was like our big kids were too young to know the implications of all these interventions, and to some extent, they were more curious than intimidated. When we focused on how out of place the NIRS monitor was on his forehead and IV lines were in his arms and leg, my preschooler exclaimed, “Oh, look, he has bears on his bandage!” We spend the next few days as a family at Peter’s side, reading to him, talking to him, saying everything we would want him to know for a lifetime in case these were the last hours we were to spend with him.

At four weeks old, Peter underwent his first open-heart procedure. He made it through surgery and exited the operating room with his heart and lungs supported by ECMO (life support). He was soon able to separate from ECMO and continued to improve over the next several weeks but he never got out of heart failure. A few weeks later, he began to have unexpected respiratory distress. During intubation, his heart stopped. Our team administered CPR for 30 minutes before putting Peter urgently on ECMO. Our surgeon gave us these memorable words, regarding the consequences of this arrest on Peter, “Good news comes slowly. Bad news comes quickly. His kidneys, liver, and lungs can recover [from the oxygen deprivation during the arrest]. His heart will probably recover. We have to wait and see how his brain recovers.” We craved answers immediately, reassurance that our baby would be ok. But there were no guarantees, no remedies. Just waiting. And this was the most terrified we had ever been as parents.

Over the next several days, Peter improved slowly and it seemed like there was no obvious permanent damage to his body.  However,  it was also clear that Peter would spend many more weeks, perhaps months, in the PICU. He was having heart arrhythmia and two of his heart valves were now experiencing moderate leakage, which was bad news. Our team approached us about a heart transplant, believing it was Peter’s best chance. He was listed for a heart transplant at two months old. A ventricular assist device (VAD) was placed shortly after to stabilize Peter’s heart until transplant. Peter’s health and the VAD required that he wait for his transplant in the PICU, however long the wait might be.

While Peter was spending the first several weeks of his life in the hospital, we had so much support at home from friends and families. I was staying at the Ronald McDonald house almost constantly. My parents stayed at our house to help take care of our older two children. My husband worked long hours to continue to financially support our family. My husband’s parents spent time with Peter in the hospital while I was home. We had home-cooked meals delivered several times a week, and friends looked for special ways to bless our big kids, who were devastated by the separation from their mom. We knew the road to transplant could (probably would) be a very, very long journey. I began spending the weekdays at the hospital with Peter and came home to see my husband and older children on the weekends. After four more months in the PICU waiting for a transplant, Peter received his special gift. This was the biggest blessing we could have ever imagined!

Peter stayed in the hospital for a few more months to recover and was released from the hospital for the first time at eight months old, to stay at the Ronald McDonald House near our hospital. We stayed at the Ronald McDonald House for several weeks for close monitoring by our team. During that time, Peter experienced a relatively smooth recovery, which included two short hospital stays, and the closure of a diaphragmatic hernia, and the placement of a gastrostomy tube (G-tube) for nutrition. At nine months old, Peter finally came home for the very first time.

Peter is now two-and-a-half years old, thriving, and two years post-transplant.  He loves, reading, playing outside, and keeping up with his siblings. We are forever thankful to our donor family that we can have our baby home and living life with us! We still have no shortage of sources of fear: organ rejection, infection, viruses (Covid-19, anyone??), complications from routine procedures, transplant-related cancer, developmental delays, proper nutrition and growth, childhood injures; the list goes on and on. Sometimes it feels like fear will swallow us up. Certainly, if I had known all the steps of this journey before we started, I would have curled up in a corner and never come out. Life is tough. We must be too. Peter definitely is. Peter received a heart transplant to live and to do anything less than help him live to the fullest would be a disservice to Peter and our donor angel. We choose to be present in the moment, appreciate each day, love the times we have together while making wise, safe choices and preparations. We know that not every day will be bright and easy, and that reality can be disheartening, but we choose courage, faith, and gratitude.

Preparing Children to Visit a Sibling in the Hospital

“How am I going to tell my older two kids that their brother isn’t going home this week as we thought and that he may not go home at all?” I anguished as I sat helplessly waiting out the hours until our sweet baby, Peter, would have his first open-heart surgery, simultaneously wishing time would stand still in this moment and also speed up so we could get this child’s heart repaired and healed. At our doctor’s suggestion, our entire family was on the way to the children’s hospital where Peter had been for the first three weeks of his life. Earlier that day Peter had been moved from his NICU room to the PICU to prepare for surgery. This weekend would be the first time our kids (then 7 years and 3 years) had seen him intubated, sedated, and with multiple IV lines. Heartbreaking for me as a parent. And I had no idea how our big kids would react.

As a parent, preparing oneself for a critically-ill child’s hospital stay or surgery can be all-consuming. However, additionally preparing siblings to understand and cope with what their brother or sister is going through can be downright overwhelming. When Peter was born, he didn’t come home from our local hospital before being transferred to the nearest children’s hospital, which was over two hours away from our home. That hospital stay ended up lasting over eight months, where Peter underwent five catheter procedures, three open-heart surgeries, a heart transplant, and three other non-heart related procedures. 

Caring for our older children while Peter was inpatient was challenging but just as important as making sure Peter was receiving the best care. These are some of the things that helped us. 

1. Ask for a ChildLife specialist or someone trained in sharing about what happens in a hospital in a kid-friendly way. ChildLife specialists can help provide resources for talking with siblings about what is happening to their impatient brother or sister, from child-friendly books to dolls with similar anatomy or devices as the patient. They can also bring activities and toys to occupy siblings during those long, boring hours in the hospital. Our wonderful ChildLife specialists brought books to help our older two understand the NICU and also provided several crafts. (Yes, there may have been some paint projects by our three-year-old going on in Peter’s PICU room from time to time!)
2. Involve siblings as much as possible. It is natural for parents to be consumed with the information, decisions, and sheer magnitude of care for their inpatient child. It is also easy for siblings to fear being forgotten or left out. Older siblings may not feel a connection yet with their new brother or sister. Their source of stress may stem more from separation from parents and fear of displacement in the family than their sibling’s poor health. Reassure siblings that they are still important and loved, that you are still there for them, and no matter what happens you will face it together as a family. We tried to send the basic message, “This is hard, and it might be scary, but we will face this together.” To help foster a connection, make it a priority, as much as possible, for siblings to visit the hospital and interact with their brother or sister. This might look like drawing a picture to hang prominently in the hospital room, reading a book, or giving a special stuffed animal or blanket to their sibling. Encourage siblings to make a connection by saying, “Your brother can hear your voice–recite the poem you learned in school. Tell him about the picture you drew.” Another way to engage siblings is to invite close friends or extended family to love on them. This might look like an aunt taking a sibling for ice cream after school, or out to play on the playground near the hospital. 
3. Be Honest and Encourage Questions. We answered our children’s questions with enough information to take away the fear of the unknown and satisfy their curiosity but were careful not to overshare graphic medical information or theoretical scenarios. We were clear about the fact that Peter was very sick. Our kids didn’t know what a heart defect was (and my husband and I didn’t either until Peter), but we shared, “Peter’s heart is sick because he has something called a heart defect. With this kind of sickness, Peter needs to be in the hospital so that doctors can help his heart get well. It might take a long time. We want to make sure that Peter’s heart is healthy before he comes home.” 
4. Don’t make promises you can’t keep. Sometimes siblings may wonder if their brother or sister is going to be ok, or when he or she will come home. Address these concerns directly but avoid making concrete promises that you have no real control over keeping. At one point, we were scheduled to be discharged after three weeks in the NICU. It didn’t happen (and we ended up in the hospital for several more months). We learned to say, “Yes, we are coming home, if the doctors say that Peter is healthy enough.”
5. Kids may not be freaked out by the same things you are. Our older children visited Peter’s bedside before his first open-heart surgery when he was intubated, and also after surgery when he was on ECMO (life support). Seeing a baby with so many tubes and cords was intense, scary, and utterly overwhelming. I was concerned that our kids would be scared by everything on and around their brother. Imagine my surprise when one of the first things they commented was, “Oh look, he has bears on his pillow.” Older children may be more disturbed by the evidence of critical illness. It can be scary for anyone to witness that. Some children may not feel comfortable at the bedside. Validate their feelings, encourage them to visit, and if they need a break or more time to get used to the hospital, give it to them.         

Breathe and do the best you can. Having a child in the hospital is one of the most stressful experiences a parent can go through. During this exceedingly uncertain time, many of us long for something or someone to tell us what to do, how to act, how to make sense of everything transpiring around us, and how to simply survive. Unfortunately, there is no magic wand or one-size-fits-all handbook, no set of strategies or script that works for all families in all situations. Hold all of your babies close, and love them the best you can.