Need to know how many moms are dealing with a baby with a hole in their heart?

Lisa - posted on 01/24/2013

My daughter was born with two holes, one small which was not a huge concern but the other was a "moderate to large" hole at 7mm. I found out two days after she was born. I did not know how to react, I guess more afraid at the most. I wondered how and why it happened. I never smoked, never drank, ate healthy and worked out till a couple days before I delivered her. I even cut out caffeine! The hospital visits started... She had ECG's and sedated echo's done. The visits were so stressful on us because we prayed that she did not have to go for surgery. The cardiologist was concerned because she is very petite, which can be contributed to the hole. She had no symptoms, no medication do that is why the surgery was being held off. She went for a sedated echo yesterday, and we were expecting the bad news as usual. When the cardiologist came up to us he said that the hole had gone down to 3mm! I just looked at him with tears and said so it is closing, he said yes! I asked him about surgery and he said most likely not!!! Just a few months ago those answers would of been the opposite. I am still in shock and I feel I have won the lottery!!! She just had to go back one a year for checkups. I know now that she's small because that is her genetic build and not the home. I feel a huge weight has been lifted off of me. I know how every other parent feels who is or who has gone through this. People can say things to try to make you feel better but if you have not been in the situation you have no clue. Miracles do happen... Kids are tough!!!

Jennifer - posted on 05/02/2010

My older son was a 29wker and had a murmer, indicative of a hole, until he was about 4m and then it seems it had closed up. You are correct that nearly everybaby is born with a tiny hole and therefor it is very typical for preemies to have one. They do often close. One of my best friends sons was full term and born with a hole that has yet to close. He will be four in August and they are still just monitoring him because they say the older he is the better it will be before he has surgery. I don't know the size of the hole but for the most part he is physically fine. He does seem to tire faster then other boys his age but his personality is not really an active one anyway. Maybe that is his brains way of copeing? Anyway surgery is inevitable but they have had almost four years of everything being fine.

Maggie - posted on 04/19/2010

Hi Stephanie. They found a hole in my daughters heart 1 month after she was born (she was born at 36 weeks). She has a 7mm VSD which has not closed since she was born. we have been refered to Sick Kids in Toronto (where we live) and we may have to go through open heart surgery with our little monkey. We are hoping that the hole starts to clse on its own before our next appointment in July but we aren't holding out much hope because she is now 17 1/2 months and it hasn't started to close yet.

Becky certainly doesn't act like a little one that has a hole except for the fact that she sleeps more than other little ones her age. We have been told that if she does end up having the surgry that she will be perfectly fine. If you have any questions or just want to talk about it send me a message on here or drop me an e-mail (maggie_lamothe@hotmail.com)

Kaytie - posted on 04/19/2010

My kids were not born with a hole in there hearts but my father was. Back then they didnt look for things like that and he didnt find out about it till he was about 35 and bye then it was the size of a quarter. He had open heart surgery to fix it at age 47 (I am not sure why they waited 12 after they found it to fix it). He is now 60 almost 61 and doing fine. I guess what I want to say is that unless the doctors are worried than you should not be worried. He will be ok. Trust me I know that its scarry when your little one has somthing wrong. My son was born with a hole in his left lung and he is doing fine now. Just prey and listen to the doctors. I hope this helps a little.

Mandie - posted on 04/19/2010

ustthought id give u a lil hope my son was not born with a hole in his heart but i was born with only half of my heart im healthy and when i was at school i did a lot of sports also my main artey from my heart the one that goes up towards ur throut was not formed properly my mun was told i would die by the age of 2 but many years latter i am still here was told i was never able to have children but i soon have prooved them wrong yes he was a prem but that was not my heart it was because my waters broke at juat 20wks 5days so i hope that helps i was also given a pace maker when i was only 5 yrs of age still have one to this day for i have an iregular heart beat tke care

LAURA - posted on 02/28/2010

Hi Stephanie, I know how you are feeling & what you are going through. Our son was born premature & also had a hole in the heart apart from the usual one as you know. His hole in the heart was between the two valves which was called a Large VSD (Ventricular Septum Defect). We were on edge all the time whilst he was in hospital, with him having this & being premature. We went to Glenfield Hospital in Leicester (the heart hospital) & they were absolutley brilliant as they talk to you about what is going to happen & if they are worried about anything they say there and then.
You will be on an emotional rollercoaster as you do not know whether your child is goin to survive the operation (I know that might be upsetting but you have to face facts in these sort of situations & be prepared for everything).
The sight of seeing your baby go through this, makes you think it is your fault but trust me it is not your fault. Whatever you do, do not blame yourself for this. It is just one of those things that life likes to throw at you.
When you see your baby after the operation, he will have string, pipes & wires coming out of him but dont be alarmed as they are the end of the stitches, the pace wires that go to the heart (not permernant) & the drainage pipes. Over a few days these will slowly be took out. The stitching is unbeliveable as they do it like drawstring nowadays not like the olden days where you see it all on the outside.
I hope I havent scared you in anyway after telling you this. I just thought I'd let you know what it was like & what you go through. >:-D

Jessica - posted on 02/26/2010

My daughter Lexi had to have a PDA ligation (the little hole) at ten days old. That little hole in her heart caused us to have many long nights in the NICU, her vitas were up and down, good then bad. We tried the meds 3 different time before we had no choice but to do the surgery. She now has a tiny heart murmur, but the doc's have not linked the two together. Not sure if this helped you with anything but I hope it does.