Coarctation of aorta

[laura1401]

Hi all, can't believe I'm here writing this. I am a congenital heart defect baby and at 34 I've had quite a few major surgeries. Due to my history all of my pregnancies have been monitored quite closely, I have two boys already and they are both very healthy with no cardiac issues. I am currently 27 weeks with another boy, I had my 20 weeks anomoly scan done weeks ago and was told everything looked fine with bubs heart but that they would rescan in six weeks as coarctation of aorta is very difficult to diagnose antenatally. Anyhoo went yesterday for repeat scan, and was told to go wait with hubby in a counselling room and she would be along to discuss scan. The obstetrician is fairly sure baby has a narrowing at the arch of the aorta and she wants to rescan in 3 weeks (se now going on holiday) with a paediatric cardiologist present. She thinks from what she sees is he will require open heart surgery within 48 hrs! I'm in total shock, I thought everything was fine and now this, I'm thinking it must be quite severe if she is mentioning surgery that soon. She won't say it is for definate but if she's talking surgery then she must be pretty certain. I'm distraught and can't bear to face anyone even my hubby, as it must be my fault he has this due to my coarctation and it being congenital. I would never wish what I went though to now happen to my baby.

 

[Masie]

Hi there,

I couldn't read and run. I have a bit of experience in this area as I have worked with children post cardiac surgery. From my experiences, most children with this condition have a good outcome and it is fairly normal to have the repair done soon after birth. Obviously, when you have a scan with the cardiologist, they will be able to answer all your concerns but I wanted to give you a bit if reassurance.

I also see that you are in Glasgow so I am assuming that you will be referred to Yorkhill and want to assure you that they are very good and you are your family will receive the best care. They also have a team of cardiac support nurses that are fantastic.

Take care and please post updates when you know more x.

 

[going_crazy]

Hi, just to let you know that my LO is also a CHD bubba. She's had a couple of surgeries so far. Hope you're ok xx

 

[laura1401]

Thanks for ure reassurance, I had my cardiac surgery at yorkhill as a child too, I didn't have my first surgery till I was 7 tho, so when she mentioned a repair so soon after delivery I was really shocked, I think that's why I'm convinced his must be worse than mine was. I work as an anaesthetic nurse in the southern and have watched many neuro babies and their parents come in and how distraught the parents were, it's sooo horrible thinking now that he will have to go through so much as a newborn. I think having some medical knowledge in this situation is not so good. Kinda wish I was oblivious in a way.

 

[Soccene]

Hello,

Thought I would share my experience with you. My son was born with coarctation of the aorta as well. First of all ultrasounds are never 100%. My son's wasn't even diagnosed on ultrasound. He was diagnosed on his 3rd day of life. Most co-arch babies are also born with a VSD this hole allows the blood to reflow to avoid the arch. The ICU will use meds to keep the hole open until surgery can be preformed. I won't go into the hospital stay with my son as I wish not to frighten you. Most cases are not as extreme as my darling son's. he spent 6 months in the ICU post op for complications. But let me tell you how many babies came and went for their heart surgeries. Most were only hospilizied for 2 weeks. My son had his surgery at 11 days old.
There was nothing that you did to cause the defect (if there is one) for us we did genitic testing and there was no known cause. So please don't blame yourself. Your child may have to have surgeries but should go on to lead a normal life with follow ups at cardiology. My son has had 2 heart surgeries and waiting for a 3rd. All regarding the aorta arch. He is a active 4 year old. You wouldn't even know if he didn't have a zipper scar. Keep your head up your baby will be just fine with the advancing in heart surgeries.

 

[louise2710]

So sorry to hear this. My LO was a CHD baby too, though they missed it at all scans (and through two lengthy hospital stays for serious chest infections) and we didnt find out until he was 8 months old. He needed to have surgery within 48 Hours of us finding out there was even an issue (think it was actually 36 hours). He had co-triatriartum but this was fixed with the surgery and hes doing great now. I cant offer any real advice as i didnt find out when I was pregnant, but just wanted to send hugs and offer support! You need to know though, that this IS NOT your fault. Its an awful awful thing to happen but youre not to blame! xx