Hey all, My name is Kayla aka Levi's mom.
my sons case manager suggested I join this group- encouraging me to trauma dump on people who understand where my feelings of anxiety and stress come from. Apparently it's not normal for a mom to spend nights watching their babies to make sure they're breathing/feeling for pulses in the extremities… and statements like that concern others-but it's been my life for the past two years.
I'm a mom of 3, my youngest was born in 2021 and at 3 weeks old his peds referred us to cardio for a murmur. My husband has bicuspid aortic valve and it's never been something that we've had to touch, just annual cardio appt to monitor so we weren't all that stressed at the time. 3 weeks after the referral (Covid shut downs had things moving slow) we were finally able to have a cardiologist examine him . He was 6 weeks old. The appointment quickly turned into a 2.5 hour drive to Sutter medical center in Sacramento and into surgery for emergency coarctation of the aorta repair. He had a mini thoracotomy and genetic screening didn't pick anything out of the norm up. He has hypoplastic left heart syndrome as result of the severe coarctation and he has bicuspid aortic valve (fortunately- because had he not had a murmur we wouldn't have realized it was much more serious).We're monitoring his coarctation repair. We've been advised that it isn't uncommon for it to need another less invasive correction procedure. My son is now two years old- we have since relocated to Utah and are awaiting his first sedated echo and ekg. We should be finding out if he needs another procedure this upcoming year or if we need to begin BP management. Being so young we don't know if there will be any significant physical limitations other than the typical "no high impact sports, heavy weight lifting". No big deal at the moment. Just processing that we may have to have another procedure or even another after that.
Overall- I'm just looking for support from other people who maybe have gone through something similar or share a similar diagnosis. Suggestions on questions I should be asking his cardio team? Maybe good books for children regarding heart health in a fun way or undergoing medical scenarios. Just bracing myself mentally, although we've been very fortunate in his healing process and I understand that others are not always so "lucky" I want to feel more prepared. I am coming terms with that things went beautifully for a bad situation but it's okay for me to feel all that we went through because for me, it was traumatic and I hope he won't have to remember any of this. Plus, I may be able to comfort others who have gone through parallel struggles or at least relate as a stressed out mom.if you made it to the end-thank you, Kayla
First off I just want to say that I'm hoping for the absolute best for your little one and am sending you the biggest hug. My son is 7 months old and had open heart surgery at 5 weeks. He has a hypoplastic left side of his heart and required an arch enhancement, VSD & ASD closure. We still have one outstanding issue with his mytrial valve that may require surgery in the future. I fully relate to checking for breath and feeling his extremities for a pulse. Perhaps to an outsider that sounds odd, but I think any parent who has gone through this level of trauma has done those things. I hope your son is comfortable and his health continues to strengthen.
You're further down the journey than I am, and I know the prospect of more surgery/interventions is terrifying. I truly hope that whatever the best outcome for your boy is will come to fruition. You're not alone.
My son is 17 years old and has Hypoplastic Left Heart Syndrome. He has faced many obstacles over his life but is a survivor. He just started his senior year and is being sought after from multiple colleges for his academic achievements. I would love to tell everyone that our worries get easier, but they don't. I still find myself checking for breath, looking for signs of heart failure, etc. The best advice I can give is to ask as many questions as you can and don't accept generic answers. You know your child better than anyone. If the answers or course of treatment doesn't seem to fit the issues your child is having, say something. My thoughts and prayers are with our heart kids as well as their parents during our turbulent journeys.