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My unborn baby will need heart surgery :-(
Hi everyone...I just found out a few weeks ago at my 20 week anatomy scan that my baby will require open heart surgery 3 - 8 weeks after he's born. He has what's called a complete AV canal defect. Obviously my husband and I were very scared at first but now we have our legs under us and have found a great pediatric cardiology group with Columbia University which we have a lot of trust in.
Just wondering...has anyone else gone through surgery with their baby and if so, do you have any pointers or tips or anything you know now that you wish you knew before? We just have no idea what to expect emotionally (and more) and don't know anyone else who has gone through this type of thing.
Thank you so much!!
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Re: My unborn baby will need heart surgery :-(
My son had major surgery at 2 days old. I won't lie, it was incredibly hard.
The things that helped were, leaning on each other, and not getting to far ahead. As long as I focused on today, I was able to not lose it. My son was in the NICU and there was little I could do the first few weeks to care for him. So, I pumped. The hospital had a pumping room and I went 5 times a day. It kept me busy, kept me from going crazy and helped me feel like I was doing something for him.
Let the people around you know what you need. It will be hard, but if what you need is time alone tell them. If you want them to come and visit, meet for dinner, bring you coffee, tell them. When they say "let me know if you need anything" TELL them. They want to help, and having the support is nice.
Hugs. It isn't easy, but you can do it. Also, come to the board for support. The ladies here know just how hard it is. Oh, and the preemie board might help. Even if your baby isn't premature, they have experience in the NICU and understand the emotional toll it is.
My nephew has Tetrology of Fallot, which is 4 heart defects. He had surgery when he was less than 24 hours old, then again at 8 months. He is almost 4 and doing wonderfully well. He had no complications. We often forget he is a heart baby.
The advice I can give is to ask for what you need. My family was amazed by the generosity with both time and help, and even a lot of offers of straight out cash, which we did not need thankfully. My brother was lucky to be able to work from the hospital, so that helped a lot, since he was there for over 3 weeks his first year and needed someone there the entire time. I also live 1.5 miles from the hospital, so I could come when ever I was needed (5am-9am, so they could trade shifts and get niece and nephew to school or from 4-8pm, so they could trade shifts on the other end).
Also, my nephew was christened before the surgery. I am atheist and only my brother and I were there, since SIL had a c-section and his first surgery was so soon, and most of the family was needed in other places, with the older kids and with SIL. If you want to do that before the surgery, make sure to line up the right people. My SIL is very religious, that was important to her.
Also, take any and all classes you can about care and CPR, ect before your child is born, so you don't have to do that once the baby is born. We even met other children with TOFs and their families, which was very helpful (through the cardiologist).
I will say that there are some absolute miracles in the ped cardiac unit. You will never be the same after you go through it, but your child will be "just a child", not one with a "defect". You will forever be humbled by the kindness bestowed on you by the staff, your friends, and your child. I hope that your experience turns out as well as ours has. The initial shock was scary, as was the surgery, but the end result is a happy healthy boy who can out run his mother.
My son had open heart surgery at 6 days old. He had Tetralogy of Fallot with Absent Pulmonary Valve. He had airway complications due to his specific defect and spent over 3 months in the hospital. He is now 2 and doing quite well, given his difficult start to life.
The surgery was very difficult, but I thought it helped knowing ahead of time that he was headed for this. We also found out at our 20 week ultrasound about his heart defect. It sounds like you have already lined up a great team of doctors to take care of your LO, which is a huge piece of it all. To me, knowing ahead of time and having all the docs know about our LO and the care he would need was a huge relief.
There are quite a few heart mommas on this board. Please feel free to ask questions or vent concerns. This is a great group of mommas. My thoughts and prayers are with you and your family as you start this journey.
KathW...thank you so much for your kind words and encouragement. I will definitely check out the preemie board and also continue to check in here for support as we get closer to the due date!
JOEBunny...this is so helpful. And good idea to take all of those CPR and care classes sooner than later. I really appreciate your kindness and responding to my post! I am already humbled by everyone's support.
Another heart mom signing in...
I can recommend this board on Baby Center, which focuses on heart defects:
https://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems
Good luck to you!
One more heart mom here - my daughter was born with Truncus Arteriosus Type II, with a ASD and VSD. She had her first repair surgery at 7 weeks old, only because she was 9 weeks premature.
Sending good thoughts to you and your baby!
First of all, I'm so sorry you have to go through this. My DD was born w/ a VSD and coarctation of the aortic valve. Both were undiagnosed so my situation is a little different than yours as far as preparing for surgery. She did have open-heart surgery at 9 days old and is now 3 1/2 mos. and doing great. Altogether she was in the hospital for 3 wks.
Just take it day by day. As another poster mentioned pumping every 3 hrs. made me feel like I was doing something for her. You may also want to setup a caring bridge site. This allowed me to hear from friends and family and keep them up to date on what was happening. I really enjoyed reading all of the positive posts. Also, you and your DH just need to communicate and support each other. We had good days and bad days but we were always there for each other b/c no one else can understand how you feel.
Good luck!
www.caringbridge.org
I am so sorry you are going through this. I too am a heart momma. We didn't know until after my DS was born that he had something wrong with him (he has aortic stenosis). He was rushed to a children's hospital about 30 min away and had a cathater inserted into his belly button and groin and they used a balloon to open his valve. He was in the hospital for 13 days.
I also pumped which made me feel like I was doing something to help him. (I felt completely helpless most of the time)
During my experiece I appreciated all the love and support we received but at times it was a bit too much.We have a very big family and all the visitors became extremely overwhelming to me. I felt like when a group of people left another showed up. I would have liked some time to grieve just my husband and me. Even though I know the family wasn't expecting it, I felt like I had to "entertain" them and having just given birth it was a lot of pressure on me. Looking back I should have spoken up about what I needed during this time but I was too afraid of hurting peoples feelings.
My advice to you is to think about you and your babies needs before anyone else's. Everyone else will understand.
Good Luck!! You are in my thoughts!!
Thank you absent*minded...this will be very helpful! :-)
Thank you mackislandbride...appreciate any good thoughts sent my way :-)
Amy, thanks for the link and great advice. It's much appreciated!
Thank you so much telfakaye...I will certainly take you up on the offer to pm down the road. It's going to be a long journey but I have faith that everything will work out great in the end :-) Thank you so much for the support!
Such great advice...thank you so much for writing. All of this support is so helpful :-)
Our little guy is 2 wks old, and also has AV canal defect. He also has Down Syndrome. He was born at 34wks 5days, spent 11 days in NICU. He is doing great and will have his surgery around 4 mo old (dr said 4-6mo is the norm with avsd.) We are now watching for heart failure.
Praying all goes well for you
You are in my prayers and thank you so much for writing. Please feel free to PM me anytime you want. It sounds like you've already been through so much with an early delivery and NICU...you are so strong and I admire your strength in getting through this rocky time.
I am so sorry to hear about your little guy's need for surgery. At the same time, it is encouraging that your team of experts feels that this condition can be operated on!
Our son was born with critical aortic stenosis (we had no idea until day 3) and this caused issues with his left ventricle and mitral valve. He was in the hospital for the first 4 months of his life and had open heart surgery at 2 months.
My advice to you:
- Begin pumping soon after your son is born. Don't be too concerned if the milk is slow to come. The stress that you'll be under may inhibit milk production at first, but it's important to focus on what you CAN do for your child.
- While your baby is in the hospital, buy him beanie babies to prop up
tubes, arms and legs. Get a sound machine to drown out some of the
noise. Read him stories and sing to him. Get him socks and cozy blankets.
- Touch your baby as soon and as often as possible. Your baby will have a lot of monitors and IVs attached to him, and will be subjected to needle sticks. There will be so much that is out of your control, but you and your husband have the power to show your baby that touch can be loving and that you are there to comfort him.
- Ask the NICU/CICU to do kanagroo care as soon as you are allowed (holding your baby skin to skin.) It will do wonders for his recovery.
- Write down questions to ask the doctors and make them clarify anything that you don't understand.
- You are your child's advocate. If there is ever anything that doesn't sit right with you, speak up. You may not have medical knowledge, but your mommy instincts are correct 100% of the time.
- Along the same lines, know that you always have the option to seek opinions from doctors at other hospitals. We were told after our son had been in the CICU for 6 weeks that his only option was a heart transplant. We sent his medical records to Children's Hospital of Boston (#1 in pediatric cardiology) and they disagreed. We MedFlighted him up there and Dr. del Nido had his mitral valve operated on at 2 months. Doing this saved not only his life, but his quality of life. FYI: Your son's condition may include issues with his mitral valve. Dr. del Nido is the best mitral valve surgeon in the world.
- Ask lots of questions about what your son's condition will mean for his feeding. We were totally surprised to learn that many children with heart conditions end up having severe reflux or feeding issues for awhile afterward. I truly hope this isn't the case for your son, but you need to be prepared.
- People truly want to help. Most won't know how and will love it if you tell them exactly what you need. Some days you will want people around you and some days you will want to be left completely alone. Sometimes you will want someone to bring you dinner (or breakfast) and sometimes it would be helpful if someone just dropped off some staple items because you can't get to the grocery store.
PM me if you have any other questions. I will pray that everything goes really smoothly for you!!