Coping with baby health anxiety

[Djockey101]

Hi all
My daughter was found to have a heart murmur at birth and they have now discovered through an echo scan that she has a narrow valve opening. They’ve said they will monitor her and hopefully as she grows it’ll widen but it’s a wait and see game. I think this is also fairly rare so difficult to know what the outlook is.
I am trying so hard to be positive and strong for my baby girl but the anxiety is really overwhelming. I have been crying a lot and catastrophising.
My Q is how did others facing uncertainty about their babies’ health cope in this time?
Thanks in advance x

I'm so sorry to hear that you are going through that. I don't have direct experiences with cases like yours but I do know someone. A friend of my mom's son was born with a murmur that affected the heart's functioning (something about blood flow). He lived a completely normal life, had annual check ups and now he's a healthy adult. All you can do is wait and see.
My son had unusual reactions to fever and he was prone to status epilepticus (a pretty dangerous condition, life threatening). When he was a baby they told us we would have to be careful with fever until he is 7 or 8 years old so whenever he was sick, we packed a bag and slept in our clothes, ready to call an ambulance if the worst happened. And he was sick very often and had lots of fevers and viruses but his life was threatened only once (although doctors expected it to happen more than once).

It is difficult to live with uncertainty but most of the times the outcome is good, kids are so so resilient and grow out so many health problems.

I have a murmur, a mitral valve prolapse and a light valve leak and they discovered this for the first time when I was 34. I lived all my life with that and they told me I was born with this and nobody noticed. I always had weird symptoms when training heavily and they always called me weak and that I'm always complaining. And here I am :)

Try not to worry, live day by day and enjoy your time with the little one!

@Mandarina4
thank you so much for your reply. Really appreciate it. Sorry to hear about your own experiences, it is so tough when it’s your children as you worry about them anyway! I’m glad your son is okay despite his reaction to viruses when younger. Does he still suffer or is he okay now he’s older?
I think I am struggling with the fact she will likely need monitoring for the rest of her life. I feel so sorry for her and also the anxiety of knowing it will always need to be checked in case it worsens feels really daunting.
Thanks again for your reply x

Try to look at it like this: many of us need monitoring during our whole lives for one reason or another. I have a heart and kidney condition that need to be checked once a year but I carry a completely normal life. My son is fine now but he was monitored for 7 years. My point is, we never know what life will bring us, we all might get sick or get some health issue that will need to be checked. There are millions of people out there with chronic diseases. My sister is a doctor and she always said that seizures and epilepsy and similar conditions can be easily treated and that it's not the worse a child can get (she's a doctor and she's seen awful diseases in hospital).
Everything will be fine, even if it feels like it won't. Medicine advances a lot every year.

@Mandarina4 so sorry for my delayed reply. Thank you so much for your message. Really helpful. Hope you’re keeping well x