Hi everyone, I just wanted to say hello and reach out to any parents who have a baby or child with a congenital heart defect.
My 7 week old daughter was born with several heart defects (diagnosed at my 20 week scan).
If there are any parents here who would find it useful to hear about my baby's heart journey so far, or how the pregnancy went post-diagnosis, feel free to reply. I know how valuable it can be to meet others in a similar situation to your own.
That’s a really kind offer of yours. I am sure it would be hugely useful just to know others have come through such a hard time. And I bet you have some good information to share.How is your daughter (and her parents) doing now? Be v good to hear
Hello, yes of course I'll share how things are going (I didn't want my initial post to be huge!).
To set the scene, Abigail was diagnosed with a large ventricular septal defect (VSD), double outlet right ventricle (DORV) and transposition of the great arteries (TGA). Her pulmonary artery is also much larger than her aorta, accompanied by the threat of a coarctation of her aortic arch in the first 3 weeks of her life.
So once Abi was born, she moved from the NICU to HDU on a cardiology ward. Over her first 2 weeks, her condition deteriorated and she suffered heart failure with her lungs struggling to manage the amount of blood being sent their way (to the detriment of her guts and other organs). At 2 weeks old, she went into theatre for the fitting of a pulmonary artery band to help relieve the symptoms of her heart defects.
Initially, we were told Abi would have to stay in hospital until her full heart repair (before which she would been to reach 5kg in weight). However, as she grew into her pa band, her symptoms were improved to the extent that we were discharged home once she was 6 weeks old.
We have been home for nearly a week now, and while it is a relief to no longer be staying miles away from home, it is also very terrifying to be without all of the nurses and monitoring equipment. Having said that, we have regular visits from local community nurses, meetings with her cardiology consultant every other week, and ongoing care from the Health Visitor and a Dietician.
My husband and I are only now starting to come to terms with what we've been through the past 2 months. The support of the cardiology nurse specialists, as well as a clinical psychologist and our GP is proving to be invaluable. I didn't expect my mental health to be another factor to manage in this process, but I am told it is far from uncommon. I hope this encourages anyone who has experienced similar challenges on top of a heart diagnosis for themselves or a loved one!
As for Abi, she is steadily gaining weight with the help of specialist milk formula and an ng tube (bottle feeding exhausts her greatly at the moment, so the tube really helps her to conserve energy). She is an absolute delight and has borne every treatment thus far with incredible fortitude! ❤️
That’s a beautiful story. So pleased Abis making steady progress. You describe it so well. Gives a very clear positive picture of what a lot you have all been through. I have no personal experience of anything at all similar, but I’m sure your story will be very well followed …..and people more closely effected might make contact. It would be so good to hear about Abi’s next stages and progress…..if and when you might have the capacity to message?
Thank you so much! I'd be glad to keep you updated with Abi's progress; she's on one heck of a journey, after all. 🌻
Yes. That would be great…..thank you. And also to hear how her parents are managing to deal with the journey.
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