Newborn with TAPVC
Little backstory to give hope to parents who are dealing with children or infants with heart condition.
I was pregnant last year and my pregnancy had been a piece of cake for me. Not even a single nausea no discomfort, all my reports and anomaly scans came perfectly positive. I went into labor at 37 week 6 days pregnant (full term) and my delivery was as smooth as possible. It was unmedicated vaginal birth. Everything looked perfect and I was told to be discharged within the same day. Until 2 hours later my lactation consulted noticed my daughter’s hand purplish. She wasn’t sure if it was right thing so she called nurse to check my baby’s oxygen level. The oxygen wasn’t going above 80. Within a span of a min there was a team of doctors who took my baby to NICU and ran some tests. All tests came out negative indicating nothing was wrong. The last test was the echo test to be done. And that one report changed our life , I remember crying in agony and had so many questions.
Then came the hunt for hospitals in UAE. Since I delivered in different hospital and only 3 gov hospitals in UAE had pediatric cardiac NICU, and they had to accept our baby’s case. But unfortunately all the NICU beds were full. I went home without my baby. I fell in depression to a point I wanted to stop breathing. I would constantly think about my baby in nicu with all the mask on her tiny face. I wasnt sure if I would ever hold my baby again (I only got to hold her for 2 hours after birth). I had to ask for permission from nurse to touch my own baby.
For 3 days the running back and forth kept going , so many calls , so many mails , so many people came to help , so many prayers when finally on the 4th day one of the biggest gov hospital in Abudhabi accepted our case. My baby as transferred in ambulance (which in return after transferring her the ambulance lost control due to tire blast, God was watching over my baby :))
The surgeon informed us that due to baby being underwent (she was born 2.5 but due to NICU journey she lost to 2.2) they couldnt go ahead with the surgery and she would be kept in nicu for 2 months until she would gain enough weight. The hospital was 2.5 hour away from me so I would drive back and forth almost everyday just to see my baby while still recovering from vaginal stitches. On the 8th day after birth we went to see our baby just a routine visit, we were informed that the surgery was happening tomorrow. We asked the doctor how and why , he simply answered the baby is ready , I’m ready let’s do it. The next morning I remember team of doctors telling us all the things that could go wrong and asked us to sign papers (how can you sign a paper telling your baby might die of this this possibility, that fear kills you inside) I remember telling the doctor I need my baby back to me, whispering in her ear you need to come back to me. The surgery was suppose to be for 4 hours but it was completed within 2 hours it was an open heart surgery on a 9 day old Baby. She was transferred back to NICU and I saw her within half hour of the surgery. She was fighting anesthesia so they had to increase the dose, she tried to hold her daddy’s finger. She had lost blood, so many bandages and pipes in and out of her.. we could barely see her body behind all that. But her color had changed.. she was pinkish. The doctors told us they will have to keep her for a week in NICU but she was moved to general ward within 3 days. They told us 4 days in general ward but she was discharged within 2 days. They told us medication would go on for a 1 month but they asked her to stop within 1 week of her checkup.
My miracle baby is 15 months old now with no limits to her braveness. She is a warrior. She has always been ahead of her milestones. She cant sit for a second, she is always running jumping … there is nothing that can hold her back. She is thriving!!
So hang in there Mama! The road might look difficult but you were chosen from god because no normal hearted person can bear this weight.
1 out of 10,000 gets TAPVC , what were the odds it was my daughter despite having normal pregnancy and delivery? God knew we as a family of 3 could do it. I am forever grateful for my husband to be the pillar of strength for me and my family.
HANG IN THERE! THERE IS ALWAYS HOPE!
I pray this journey ends for you soon❤️