My name is Hannah Soileau and I am 26. My husband, Ben, and I have been together for 11 years and married for 4. I was 25 when I found out I was pregnant with our son. We had everything planned out. I had a new job that I enjoyed and loved my coworkers. We were renting to own our first home. We were excited. I couldn’t dedicate to any name but Wyatt. After he was born it became clear why. The meaning of Wyatt is: strong in battle, born leader, persevering, disciplined, determined, courageous, ambitious, successful and tenacious. Wyatt was all of these things.
During my pregnancy, I had high blood pressure, but I was always told the baby looked great. I had special ultrasounds done all the time. By my third trimester, I went to 2 appointments a week, which were an hour away from my home. I always felt paranoid that something was going to be wrong. I just thought it was because I was a first-time mom and I had no idea what it was going to be like. I was induced two weeks early because of my blood pressure problems. I was told a few times about what happens during delivery. The amount of staff in the room, how they would check him, and let us have our skin to skin moment. I was even told sometimes the baby won’t realize he or she needs to breathe on their own and may be stunned, leading to respiratory helping them figure it out. I remember being so terrified of what if he couldn’t breathe. That is literally what happened to him.
At 11:40 pm on January 28, 2020, our son Jonathan Wyatt Soileau was born. I held him very briefly before they had to take him away. Wyatt wasn’t able to keep his oxygen saturations up and they took him to the NICU to do tests. Ben went with him as I was left behind in my room. When it was time, they took me to see him. He was already intubated, and they were doing his echocardiogram. I was told we were being transferred to UNC. We lived 2 hours from UNC hospital but the hospital I delivered at was an hour away. I went by ambulance while Wyatt went by helicopter. When we were settled in my new room with our families, the doctors came in and explained what was wrong with our baby boy.
Wyatt was diagnosed with TAPVR. TAPVR is a heart defect where all four pulmonary veins do not connect back to the left atrium normally, causing oxygen rich and non-oxygenated blood to mix. This defect is hard to detect in pregnancy and explains why I had a lot of high blood pressure problems. My body literally worked over time for his. Wyatt had Infracardiac TAPVR which meant his veins drained down to his liver. His veins were also obstructed, or narrowed, which complicated his diagnosis even more. He had to have emergency open heart surgery right then. He had a 50/50 chance of survival. We had a few minutes to see him and to tell him how much we loved him. He was only 11 hours old when he went for his first heart surgery.
7 draining hours went by when we finally got the call. Wyatt had successfully made it out of surgery and wasn’t even on ECMO, which we were told was a big possibility. ECMO is a life support machine for the heart and lungs. It is a risky procedure itself and we were so glad he didn’t need it. We went to his room in the PICU and spent all afternoon and night with him. At 2am I got a call to my room from Wyatt’s surgeon. Wyatt was crashing and needed to be put on the ECMO machine. He was on ECMO for a week. We spent Ben’s 27th birthday there. Wyatt was 12 days old before we got to hold him.
Over the next few weeks, Wyatt’s chest tube output was significant, and he was diagnosed with Chylothorax. His lymphatic fluid leaked into the space between his lungs and chest. This affected him in so many ways but he also couldn’t have any milk. He was only on IV nutrition. He had his second surgery, thoracic duct ligation, to try to fix his Chylothorax at 2 weeks old. Over the next few weeks, Wyatt got rid of one chest tube, got rid of his breathing tube, took his pacifier, and was intubated again. After a little more time, he was breathing on his own. Ben went back to work while I stayed in the hospital. I quit my job because I didn’t know when I would be able to go back. I also knew that when we took him home, Wyatt would be my full-time job.
With everything going on, COVID 19 made its impact on the U.S and Ben wasn’t allowed back in the hospital. He went two months without being able to see Wyatt. We FaceTimed, I sent pictures and videos, and we talked a lot. He wasn’t able to be there for the day Wyatt got rid of his second chest tube, my birthday, Easter, Wyatt’s first heart cath, and his g tube surgery. He also wasn’t able to be there during Wyatt’s endless crying, stomach troubles, all the tests, and endless pokes. He had weekly echocardiograms and almost daily x-rays. Finally, we were able to switch out one day. I went home and Ben got to spend the day with Wyatt. I was constantly told I needed to get out of the room and take some time to myself. I rarely did.
Now looking back, I’m glad I spent so much time with him. It’s all I had. No one has any idea how easy it was to stay in that room with him every day for over 5 months. Wyatt managed to get down to 1 liter of oxygen but usually stayed on 2 liters. I thought it was amazing for as much trouble as he had. A few weeks later, Wyatt’s stomach troubles were worse. He couldn’t get much formula through his g tube without being miserable. He was going to need a j tube. Before we got to it, Wyatt aspirated into his lungs, got pneumonia and crashed. He was intubated and we were starting all over. But it only got worse from there. His new echocardiogram showed he needed another heart surgery to fix his narrowing pulmonary veins. Before they could get to his surgery, he was put onto ECMO. Ben was allowed in and we said our “see ya laters” the next day when Wyatt went for his second heart surgery.
Our little man made it back to us that evening. He progressed slowly and after two weeks, he come off of ECMO again. He got his j tube while he was recovering so he wouldn’t go for surgery after being weaned off his medications. He was so immune to strong medications that would knock an adult out for days. He struggled all the time with weaning. We were told not a lot of babies go on ECMO twice and he really needed to recover because a third ECMO run is pretty unheard of and it wouldn’t be good. He developed a vascular injury to his hand that we knew was so bad he would eventually lose his fingers. A few weeks of slow recovery and it happened. Again. We felt so defeated. But by the grace of God, Wyatt was successfully put on ECMO a third time. Our little guy made history in UNC Children’s Hospital. He had another heart cath and the results weren’t good. Other hospitals were consulted but no one thought they could do anything especially with Wyatt still on ECMO and now on dialysis.
The time came Wyatt needed to come off of ECMO. He seemed to be doing okay on the low settings. They took him off and by the next morning, we were told he may not make it through the day. We prepared for the worst as good as we could. You can never be truly prepared. Our family was allowed in. We said our goodbyes. On July 14, 2020, Wyatt gained his wings. He fought one hell of a fight. When I told him it was okay, he knew I wasn’t ready. He went on his own terms, like he did everything else. This journey has been crazy emotional, hard, testing, amazing, and wonderful. As hard as it was, those 5 1/2 months in the hospital with him was the best time of my life. Some people may say I was in denial. I just had so much hope.
Wyatt showed us what pure love was. He showed us what it was like to be brave and determined. He was resilient and showed his strength. He showed us how to have faith and hope, to never give up, and to fight like hell. Wyatt had my attitude and the best side eye looks. He was always so loved and spoiled by our amazing UNC staff. I’m devastated we don’t get our forever with him. The life that we planned. We left our home because it was too hard to stay there. I also couldn’t go back to work for my own personal reasons and Ben is our only income at the moment. So, we live with my parents who have been so amazing to us and we are forever grateful. Our home is filled with Wyatt’s pictures and accomplishments. He overcame so many obstacles and gained 1,802 beads of courage. 2 heart surgeries, 2 heart caths, thoracic duct ligation, g tube surgery, j tube revision, 5 bronchoscopies, countless PICC lines/IVs/pokes, countless tubes, x-rays and tests, feeding intolerance, pneumonia, intubations, vascular injuries, and successful ECMO 3 times.
Wyatt was the strongest, bravest, most amazing, resilient, determined, funniest, most handsome kid ever. God gave us the most precious gift we will ever receive. He hand-picked Wyatt for us and us for Wyatt. Our faith was tested every day. But we saw how many people Wyatt affected. People from all over the world shared love for our son. He brought people closer to God, including us. It amazes me that God chose our child to send his message. I wish I had the perfect advice to other heart moms and dads. Every situation is different. Having an amazing hospital staff made our experience a little bit easier.
If your child is still fighting, keep fighting with them. Do not give up. Spend every moment with them. Take a walk, or don’t. Do what you feel is best for your mental health. For other parents who have lost their warrior, I’m with you and I’m so sorry you have to feel this loss. Every day is a challenge. Some days I feel great and others I can’t stop crying. Try not to stress about the finances because it will tear you down.
Spend time with family. But also spend time together as a couple. The best thing we did after Wyatt’s memorial was go on a trip around the country. We took Wyatt with us. He went to every park, every sight, every hike and trail. He is cremated and in a box with Noah’s Ark crafted on the front. God saved Wyatt from his disease just like he saved Noah from the flood. Our child knew nothing but love. We are so proud of him. He is our heart hero, our little fighter, and our miracle. He is forever our Warrior Wyatt.