Any heart mamas here?

babylimas

Just found out my child has a heart defect and faces open heart surgery at birth. Wondering if there are any other mothers dealing with heart conditions on this board.

babylimas

The baby has tetralogy of fallot. I am meeting with the surgeon on Tuesday and waiting on amnio results for potential chromosomal disorders. I'm in the very beginning stages of learning about what we are facing.

babylimas

That's a good idea ! Thanks! I'm lucky to live near a hospital with a great pediatric cardiology department. We'll explore traveling for surgery, but can stay here if needed.

Unfortunately I have already googled too much. it is actually rather soothing to see it all laid out so clinically. ToF is a major defect (it's actually 4 defects in the heart), but is the most common critical congenital heart defect. So the doctors are experienced in treating it.

Our biggest worry, after the OHS, is how this will affect our child's life. It seems there is a wide range and it requires lifelong attention. The unknown is so scary. It's hard just sitting and waiting. I wish there was something I could do.

CaptainSerious

My son had a coarctation of the aorta, but lived with it until he was seven years old before we had it repaired. So I know a bit about the fear of having a child undergo cardiac surgery, but not about how scary it must be when your baby is a newborn. Please feel free to come hear for support anytime. My thoughts and prayers are with your family.

gremaud07

I am it not on here much but did see this post. My son had open heart surgery at 3 weeks old due to his valve formed incorrectly.. After surgery they did genetic testing to find out he has DiGeorge Syndrome which is he is missing part of chromosome 22. If you have questions feel free to message me.

Junebug060609

@choicesmom

babylimas

Thanks @choicesmom. For some reason I feel like we have talked about this since I originally posted? We have since discovered our son has T21. After a couple of echoes his TOF seems to be on the easier end of the spectrum. His pulmonary artery is pretty wide and not changing at this point. The cardiologists are hopeful he will make it until 4-5 months for surgery, so we are feeling pretty confident at this point. Now it's just waiting for him to get here and see how he is doing at birth. It's always wonderful to see other TOF babies doing so well! It's reassuring.

KMaine81

Hi Babylimas - I'm not a regular poster here, but I visit from time to time. I'm a Heart Mom to a baby girl. My daughter has a heart defect called Hypoplastic Left Heart Syndrome (HLHS) - basically, the left side of her heart never developed, so she is living with only the right side of her heart. My baby has had 2 open heart surgeries - the first when she was 6 days old. Her second was at 4 months old.  She will have her third surgery at around 2-4 years of age. And, one day she may need a heart transplant.  Unfortunately, unlike many less serious heart defects, HLHS isn't a condition that can be "fixed" with surgery - it is a chronic condition with an unknown life expectancy, as the surgeries that allow HLHS patients to live have only been around for 30 years. Right now, the survival rate for this defect is 75%. HLHS (and many heart defects) used to be a death sentence - now there's a lot of hope. Science is advancing and the hope is the survival statistic will continue to rise as doctors try to find a repair/cure for this condition. 

All of that being said - Heart Kids are AMAZING and so very strong. My little girl is doing so well despite her incredibly serious diagnosis. She didn't have to come home with feeding tubes or on oxygen (something some heart babies need & live with long term). She is behind in her gross motor skills and receives PT & OT every week.  She's such a happy baby despite all she's been through so far.  

My advice is to take it one day at a time and know that there is a lot of HOPE for Heart Babies. They are fighters! Try not to fall into the "Google" trap. There's a lot of dated information about heart defects. There's also not a ton of awareness about CHDs either - so a lot of misinformation is out there as well. 

I've seen many, many TOF kids doing amazing on the Heart Mom boards I follow. BabyCenter has a specific board for heart moms. There are lots of TOF Moms there. You may want to check that board out - it's pretty active with people  discussing issues that are specific to heart moms/heart kids. I've found general special needs parent boards like this one to be very welcoming and often have discussions covering many similar issues that parents of children with serious heart defects are living with. Chronic heart conditions like HLHS can come with the same type of feeding issues, developmental delays, oxygen/feeding tubes, dealing with SSI, long medical stays etc. that many other special needs parents face. At the same time, there are many issues that are really specific to heart moms/heart kids (like monitoring O2 Saturations, ECMO issues, etc). And I'm sure there are issues parents with children having non-heart issues deal with that we don't. 

I hope this (REALLY LONG post was helpful & feel free to ask me any questions. My baby has a different heart defect that's on the very serious end of the spectrum, but I'm happy to share my experiences with anything about going through open heart surgery, feeding/weight gain issues, etc.