Jun 13
hrbrindl , Posted on SUPPORT NETWORK Blog

Preemie with congenital heart defects

When I was 27 weeks pregnant, my OB/GYN had me admitted to the hospital due preeclampsia. While having an ultrasound done, the technician became very quiet and wouldn't tell me what was going on. After another ultrasound, this one done by a fetal cardiologist, my husband and I were told that our baby had a severe heart defect, Interrupted Aortic Arch (IAA), as well as a large VSD and smaller ASD. We were transferred by ambulance to hospital that could handle the surgery shortly after birth without having to transport a critically ill baby. I was there just over the weekend before the umbilical cord reversed flow and Max was born via emergency c-section 3 months early. He was only 1 pound 12 oz and needed to wait until he was term age before surgery, so we spent 3 months and a week in the NICU before his IAA and VSD repair. Being that small with such a serious heart condition, Max had expected highs and lows before and after surgery. We ended up being able to go home after 5 months in the hospital, only to find out he needed another surgery to help with subaortic stenosis 4 months later. We are currently about 2 weeks out from that surgery and recovery is again going not very smoothly, but he is making slow progress.

At home Max is such a happy baby and is developing/growing well (so much better than expected). I am thankful for a skilled and caring surgical team that work their hardest (because Max makes them :) ) to keep Max on a good track for growing bigger and older. My husband and I take care of him every day (taking turns to go into work) and handle his nursing care (he is on a small amount of oxygen at home, eats primarily via NG tube, and gets medications 7 times a day--all before this most recent surgery). Despite all of his hurdles, Max is really just a normal, super cute, sweet baby. I can't wait to see him grow older.
  • carolonowens
    May God bless you 3 & keep you strong. I would like to continue hearing Max's progress. Carol
  • BevPohlit
    Hope all goes well. He sounds like he's a fighter, and so are you! Prayers for all of you! ❤️
  • Chad V.
    Chad V.,
    Thank You For Sharing.. I was Born with Tetrology Of Fallot and had to wait till Age 1 For Surgery. You've Got a Long and Rough Journey ahead.. Heart Issues Often Require Multiple Surgeries, and Definately Affect Quality of Life.. Glad to hear things are ok for time being. Best Wishes and Look Forward to Updates..
  • DenisPopp1
    My nephew was a premie 33 yeats ago he fit in the pa of my hand. Today he is 6 feet tall and strong as an ox. I pray this will be God's plan for your child. Peace and Good Things, Denis
  • AHA Ambassador Mark
    AHA Ambassador Mark,
    What a wonderful and touching story of survival. Your little boy is already showing the signs of determination and strength that will serve him well in the face of future challenges. I truly admire you and your husband for your commitment and love for your baby and with excellent care by all of the medical team involved my greatest hope is that Max has a long and healthy life. My very best to you and the family as you continue the journey with Max. Stay strong and seek the best care possible. MarkR
  • Julie Renee
    Julie Renee,
    I, too, had a child with a congenital heart defect. I had a son in 1984, born 4 weeks immature (emergency C-section). I definitely can empathize with you! It is heart-wrenching for the parents when a child is born with any type of defect. My son had a coarctation of the descending aorta, which is the aorta that supplies the blood to the lower extremities. His blood pressure was very, very high. Luckily, after an echocardiogram 3 hours away at a Children's Hospital, we were able to wait until he was 12 weeks of age, and he had a very successful surgery, and is now 32 years old with no complications. What I would like to suggest for anyone undergoing heart surgery and/or the family of a heart surgery patient(adult or child) is to check your local community to see if there is a group called Mended Hearts@. They are a National organization and are very supportive of patients and families. When my son had heart surgery in 1984, we had to travel 3 hours from our home to a Children's Hospital. The day of the surgery, a man (from a Mended Hearts group) came to the surgery waiting room to talk to us to offer support. This man had just worked a double shift and came straight to the hospital. He was a "God-send" to me. He, too, had a child (who was then 4) who had heart surgery at 1 day old. Being a parent, "he knew" the agony that we were feeling. I had the honor of founding a Mended Hearts@ group in my hometown hospital and heart patients and parents of heart patients become "specially trained" to visit heart patients and/or the family of heart patient's. Members can also just choose to be members for the support, and not become a "volunteer visitor". At the monthly meetings, the members offer support for one another, guest speakers are scheduled (can be a medical professional or lay person), It is a wonderful group! Call your local hospital to find out if there is a Mended Hearts@ group in your community. If you have any questions, feel free to post or email me at julierichards5@hotmail.com ~ Peace and hope to all!
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