Mamas that have dealt with CHD!

I posted in pregnancy Issues but didn't really get any replies. I'll try this again....

I found out at 16 weeks that my baby has a CHD called AV canal defect. They have told me she will need open heart surgery to correct it. I had an amnio done and luckily the results came back normal. I am now 30 weeks and I've come to terms with the horrible news but I am still curious and have many questions. I wonder how will things play out when I actually deliver my LO. Are they going to scoop her up real quick after shes born and hook her up to a bunch of machines? When will I be able to take her home? Will I be able to hold her? Is she going to be sick as soon as she comes out of the womb? Is there any mothers that have dealt with this that can give me some answers please!

Im no help but you might want to ask your doctor how they plan on handling it and what you can expect when you give birth.

Do you mean CDH? if so, my friend has a son who's 2 born with CDH, its been a very VERY rough road, but he's a happy healthy 2 year old now.

Hi JamieLee2010, my son Jace was born on 8/14/2009 with a CHD called Tetralogy of Fallot with Pulmonary Atresia. I found out early on in the pregnancy that he would have this heart defect & was prepared to deliver him in the Houston Med Center to be close to Tx Children's Hospital. I had a c-section (bc I did not dilate) and the NICU team from TCH was in the delivery room to examine Jace. They did take him quickly after birth but my fiance was able to stay by his side the entire time. I actually did not get to see him until I was able to get out of bed and walk to the NICU (which was about 48 hrs later). Jace had his first heart surgery at 4 days old to place a shunt bc his pulmonary artery was completely closed shut. He did great and we were out of the hospital 10 days later. He just had his "full-repair" open heart surgery on March 2nd. He was in the hospital for 10 days this time too. The surgery was very scary and nothing can prepare you for that, but Jace's recovery was amazingly well and he's doing awesome now. I have a carepage that you can check out if you'd like. Go to carepages.com and do a search for JaceCecil (no spaces) and his page should come up. Message me if I can help answer any other questions or concerns you may have. Best of luck to you and your little one.

Quoting Tiffiany:“ Hi JamieLee2010, my son Jace was born on 8/14/2009 with a CHD called Tetralogy of Fallot with Pulmonary ... [snip!] ... come up. Message me if I can help answer any other questions or concerns you may have. Best of luck to you and your little one.”

Wow that is really inspiring! I'm really glad to hear that Jace is recovering well! I will definitely check out that website! 10 days really doesn't sound too bad. I was thinking my little one would be in NICU for weeks! Thanks so much for your support!  

Jamie, also idk if you have a facebook account, but if so please feel free to find me on there. Tiffiany Turpin. I have met sooo many AMAZING "heart mom's" on there that have become a rock for me during Jace's surgery. You can also check out CHD websites like itsmyheart.org or mendedlittlehearts.org. Carepages was a great tool for me. I searched for other stories of kids with CHD's and found so many inspiring stories. Research, research, research! That's the best advise I can give you. And pray of course. God chose YOU to be a HEART MOM for a reason...He must have so much faith in YOU to take care of His special baby! How awesome is that! =)

Hi I was skimming through the forums and came across your thread.

I'm a CHD mum. My little man was born 2 months ago with serveral different things wrong with his little heart.

When he was born on the 18th Feb. The nurse did her routine check of his height, weight and checking limbs and heart and etc. They noticed he had a heart murmur, a rather loud one too. They took him from me and sent him straight to ICU. about 7 hours later he was transfered to the childrens hospital NICU, and tested and examined there. He was then diagnosed with Velocardiofacial Syndrome, Double Outlet right Ventrical with Pulmonary Stenosis, Hole in Heart, and Hypoparathyroidism. They gave him surgery at 2 weeks to insert a stent into his valve to open it up so that blood can flow through and oxygenate his blood better. It wasn't invasive surgery, they tried keyhole catheter through his hip first, and his docotr was so persistant to get the keyhole to work and be succesful that it took double the time of the stantard proceedure length and he lost alot of blood, also stroked and threw a clot which damaged 20% of his lower left brain. But the main issue was his heart. The keyhole succeeded and now he has a working stent in his heart. His saturations were at 45% when he was admitted and now they are stable at 91%. Saturation level indicate how much his blood is oxygenated. they are meant to be at 100%. He has had a couple seizures since his operation. He was in the NICU for 3.5 weeks after being born. We took him home and he hasn't needed to go back since unless for checkups. He is doing great, hasn't had any seizures and he isn't showing any signs of retardation from the stroke. He is acting as a normal baby should act. Moving, kicking, sucking on his hand, demanding to be fed, eating whole bottles and at 180mL now, and now he is googling and talking to people. He's a CHAMP! I wouldn't change him for anything.

He will need to have open heart surgery when he is 6 - 12 months old, since he is doing better they are delaying that to closer to the 12 months, and that is to fix the hole in his heart. Then at 10 years they will need to open him up again and place a perminant stent in his valve. Because this one would be too small by then.

I wish you all the best and mumma, just think positive and you and your baby will pull through with flying colours. It's not as bad as you think. Just give your LO as much cuddles, kisses, and all the love you can.

ICU nurses are very loving and caring people I have met. They will treat your baby very well and look after them as much they can. You will be alright. I'll keep you and your baby in my prayers.

My daughter was born in Feb 13th 2012 with a VSD (ventricular septal defect) and aortic coarctation. i was induced on my due date, and when i was ready to push there were 3 nurses and 2 other people in the room then more people came afterwards they weighed her and took her height and were planning on taking her directly to the NICU but she had great color and was breathing good so i got to hold her for a few minutes and then they took her and did a bunch of tests. My husband went with her, but I was not able to go down and see for for what felt like days. It was probably 3 or 4 hours. She was in the NICU for 12 days total. Look forward to lots of cardiology visits! We had surgery scheduled twice and canceled twice. Now she is for sure having surgery in a few weeks. Her lungs are not doing well and her lungs, heart are enlarged quite a bit and meds are not helping. It is a lot of crazy emotions but you will be surprised by how strong your little one is.. They bounce back from a lot very quickly.. <3 praying for you and your little one.. If you ever want to talk i don't get on here much, but you can check out my page for her on facebook. (facebook.com/loveforleirabelle)