Oct 3
Hncordell
Hncordell , Posted on SUPPORT NETWORK Blog

Young parents of a TAPVR survivor.

When you are expecting your first child it should be the happiest moment in your life. For babies with a congenital heart defect, like my son, the birth is not so exciting and happy. Things are taken from you as a parent that you feel are rights, like holding your newborn baby. It is not a right. It is a special gift that I feel can be taken for granted. Not purposefully, of course. 
I was perfectly healthy during pregnancy and so was my baby boy, or so we thought. I was scheduled to go for my induction February 8, 2016 at 12am at Erlanger Women's center in Chattanooga, TN. I delivered Kingston at 2:49 pm that same day. I was expecting for them to put him on my chest so I could start breastfeeding just like the millions of videos I watched about deliveries. I did not get to hold my son. In fact, I didn't get to hold him until 8 days after he was born. After they took him to the NICU, they told us we were going to be transferred to the bigger hospital for critical patients and they didn't have the means to care for him. They took Kingston before I could be transferred. By the time I was able to get transferred and into my room, a pediatric cardiologist came to my room almost immediately and told my family he was going to be taken to Atlanta for immediate open heart surgery and he was very sick. If anyone knows anything about CHD they know that 1 in 100 babies are born with heart defects. However, my son was born with one of the rarest kinds of heart defects. In fact, only 1 of 20,000 babies are born with his specific type of TAPVR. Receiving this news was very hard to deal with. I spent 9 months anticipating and imagining how perfect this moment would be only to have it taken away at the very last minute. 
The cardiology team told me to tell him goodbye and let me see him before they took him. He was blue. He was on a ventilator. He had so many ivs and wires in him. He was so tiny and fragile. I couldn't do anything to help. They took him away and I was left alone because Kingston's dad went to Atlanta to be with him during his surgery since I was still admitted and they wouldn't release me until the next day. At 730am my doctor came in and said leave. You need to go with your son. By 1pm I was in Atlanta and my son was already post op. He was still on a ventilator and had many more tubes and wires than before. He also had a broken chest bone and had just undergone open heart surgery at 20 hours old.
His recovery seemed to take forever although it was only two weeks. The first week he was in CICU where they had critical care nurses watching over him. One nurse per patient for 24/7 monitoring. The next week he was in the step down unit where there were four to five patients per nurse. Of course, Kingston didn't like that I guess and his heart decided to start going into Supra ventricular tachycardia from the shock caused by surgery AND started vomiting profusely after feedings. They thought he was going to have to go back to CICU but everything was controlled by medicine and we got to go home on schedule. 
I want to hear other parents stories of their little survivor or angel to know that I'm not in this alone! This is obviously hard for the babies but the effects on parents and family are also hard. My little boy is 8 months old and there is not a day when I don't get emotional over this. 
2 Comments
  • AHAASAKatie
    AHAASAKatie,
    So Beautiful! Thank you for sharing this story with us. Katie
  • nadiasmama
    nadiasmama,
    Mama! Hello! I so hope your son is healed and doing better. My daughter had surgery to repair her TAPVR on 9/30/16. She is 7 months old now and thriving. We did not know that she had CHD when she was born and didn't find out until almost 12 weeks later when I took her to the doctor for a runny nose. They checked her spO2 and it was in the 60s! We were flown to Boston and it was there that she had a heart ultrasound and diagnosed with Infradiapragmatic TAPVR. She had open heart surgery the next afternoon and stayed in the hospital for 9 days. Shes been home for 4 months now and is doing so well. She is still a peanut, in the 4% for weight, but fairly long, 70%. She's developing normal and even received the highest marks for gross motor development at her EI evaluation. Prior to her diagnosis she slept a lot, gained weight very slowly despite all my efforts to breastfeed her to the best of my abilities. It turns out she was getting plenty of milk, but her heart was working so hard that it was burning every calorie I could pack into her. It also turns out that she just doesn't have the voracious appetite of her chunky baby friends! Her fingers were also occasionally blue, but usually only while she was eating and we excused that as diverted blood flow or being cold. 4 pediatricians and 2 ER doctors all listened to her heart and lungs prior to her diagnosis and none heard a heart murmur or fluid in her lungs. When we were admitted to Boston, she had a lot of fluid in her lungs and we are still on Lasix for that. She also takes 1/2 a baby aspirin per day (which is such a pain to give her!) Otherwise she is a very happy and resilient baby. I so so so hope your son is the same. You are the first mom I've talked to whose child has TAPVR.
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