Anyone else with a CHD baby??

Chichi93

My first baby, Cohen, was born May 4th 2015 and he had very unexpected heart defects. He just had his first open hear surgery a month ago, September 30th. Now I'm expecting his baby sister, Aubrie, some time in April (I don't have a date because I have to be induced considering Cohen was here 4 hours after labor started). Now I have to go to a fetal ultrasound specialist to make sure DD doesn't have any defects.

Cohen has DORV (Double outlet right ventrical), VSD (Ventricular septal defect) straddling mitral valve. Along with some others I would never be able to spell.

Does anyone else know or have another child with CHD?

cmjenkies

A friend of mine from high school has a son with CDH who should be turning a year old this holiday season. I don't know his specifics off the of top of my head but I know that he was given a 0% chance of survival following their anatomy scan and I believe they had to travel to deliver at a hospital in Columbus, OH. From what I've seen, he's happy and growing well now.

cmjenkies

Okay I just realized you said CHD (congenital heart defect) and not CDH (congenital diaphragmatic hernia).

But yes! I also have a girlfriend who has twin 3 year olds and one of them has CHD and is a heart hero! He had several defects/conditions with his heart - they knew prior to delivery though. He's had 3 open heart surgeries so far I think..? He's doing great! Sweet, sweet kiddo.

amandac12581

I don't have any personal experience with CHD, but a friend of mine's second baby was born with one. They knew about it prior to birth so they were able to prepare and deliver in a hospital with surgeon's specializing in this.  I know she had a surgery right after birth (the right side of her heart was not pumping) and maybe 2 or 3 others, not sure of the time frame of them.  She's now 4 and super spunky, a total sweetheart.

Brandi81012

I do not have personal experience with having a child that has CHD, but I do see them very frequently (every day) at work (pediatric recovery room). I see them after a heart catheterization is done. I see kids who are on all sides of the spectrum. Lots of kids do wonderful after the defect is fixed.

Eta- grammar and spelling are hard

thaisac1

The good news is that most heart defects are not "genetic", so the fact that baby #1 has it doesn't mean #2 will have it too. Fingers crossed for a normal fetal echo!

NachosAndPeaches

No experience but I hope your little man is healing well and that you get nothing but good news with this pregnancy!

imrachellea

I have a friend who lost her son to a CHD a week after he was born (however he had a few other developmental issues that made him ineligible for surgery). While their story ended sadly, she has connected with many other families whose children have CHDs and have very happy endings! Praying for your LOs

adifrog

I have a college friend whose third has this (as did/does the dad). That little girl had an open heart surgery at 6 months and has just taken off since then, crawling and walking earlier than her siblings. She's amazing!

olivemomma

We have good friends whose first dd has chd that were diagnosed prior to birth. She has had 6 open heart surgeries but is doing great and is now 5. They just had their second dd who is completely healthy but we spoke to them before their anatomy scan and I know they were terrified. As others have mentioned though, chd are rarely genetic so odds are your new baby will be fine! I hope that's the case!

mytinc

My son has DORV and HLHS (hypoplastic left heart syndrome).  He had his first open heart surgery at 5 days old, another one at 5 months old and will have his (hopefully) last sometime after he turns two years old.  He's doing great and just started walking at 14 months.  

DS1 is heart healthy.  

andrag44

Awe, a fellow heart mom! 

Yes my son(s) 7 and 3 both have CHD. My 7 yr. old's is called Shones' complex he has had 3 open heart surgeries. Luckily our 3 year old was only born with an ASD and will be able to have it repair through heart cath. 

We are now on baby #3 a girl, which we were not planning to have b/c of my fear of having another heart baby. (life had other plans for us) I will start seeing the perinatologist next for the fetal echocardiograms.

I did this throughout my 2nd pregnancy also. Its not bad, you get to see your baby more often, and its gives you a nice peace of mind. Hoping your little one has a healthy heart. 

Our's is not genetic to we are hopeful #3 will be heart healthy, but we know we can handle it if she is not.

 Good luck! I know its scary. But remember- only REALLY special mommies are chosen to have these precious heart warriors.  

Chichi93

@andrag44 I'm glad your babies are doing well and I hope you get a good report with your LD as well ♡ ♡ it definitely does take special mommies to have CHD babies! He skipped his first surgery (which would have been at 2 weeks old) because he was doing so good and gaining good weight c: his doctors at Childeren's call him Mr. Chubs. Haha. I hope baby #2 doesn't have CHD but if she does, at least I'll be prepared this time. I had no idea the first time !