Baby born with heart and kidney problems

[mumsy1621]

Hi all,

Firstly apologies in advance for the super depressing post.

Sadly my son (now 6 months) was born with aortic stenosis and one partly functioning dysplastic kidney.

We unfortunately did not know any of this during my pregnancy, it came as a heartbreaking shock when he was born. I prayed they had got it all wrong. This is my first (and now last after the stress) pregnancy. I am only 28, to be a new mum with all this added heartache is something I wouldn’t wish on my worst enemy.

My son was given balloon surgery to widen the aortic valve, which is slowly beginning to narrow meaning he needs his open heart surgery within the next few months. Something I can’t bare thinking about however know need done nonetheless.

Thankfully my son is absolutely thriving and the drs have no concerns in terms of his development at the moment.

His kidney is functioning at 47% (with normal being 60%+). The drs think that his function may remain stable until he reaches pre teen age where he may then need dialysis and eventually a transplant. My worry is that the the drs believe that there is a potential his kidney may deteriorate after undergoing his heart surgery.

My mind is running into overdrive 24/7. I know nobody has answers, and nobody can predict the future to give any indication of what will happen. I struggle to find anybody who can relate or who has been in a similar position.

God has dealt me an awful card and I just need to deal with it. I just worry my son will not live a long and healthy life with these faulty organs.
A serious heart condition which will need many operations and a kidney (or 2) transplant.

My heart aches for him. My poor fiancé is so supportive however begs me to stop talking about all the what ifs. He has enough to deal with, he has the weight of the world on his shoulders as well as all the financial stress.

Has anybody got a child with a similar condition that can give me any words of wisdom.

Thank you

I don’t have similar, but I’m so sorry you’re going through such stress. It is completely understandable. I have a friend whose child is seriously disabled and they were told to expect the worst. Yet we have seen him thrive and bloom as he has grown older. He now has two younger siblings now. While he will always have issues, they enjoy the time they have with him and he adds a lot to their lives. His mum takes every day as a bonus, of course knowing the future is not promised. I’m not sure where she gets her reserves from but she is very religious (Muslim in her case). This is just their story, maybe someone with the same issue will come and give you their story. I can imagine how much stress you are going through, hoping the path becomes much clearer for you soon 💐

I don't have anything like this at all but just wanted to wish you all the best and so much love to you all right now xxx

My friends son has undergone 7 heart surgeries, his first was an open heart surgery when he was a few weeks old, and he is now 9 and is flourishing, he has also had ops on his diaphragm. He’s the most awesome dude I know.

You have been dealt a very tough card, but you will find the strength you need and your love for your boy will help you.

Thank you everybody. It’s extremely difficult!! Would be much easier if we could just predict the future.

I also would love if I knew of people in similar positions 😓

Both of my children have unusual health conditions and I have found disease specific Facebook groups to be really supportive plus I have been able to connect with other mums locally.

If you use Facebook why not try searching something like children with aortic stenosis, children with dysplasia kidneys.

It is so difficult not knowing what the future holds for them but modern medicine is an absolute miracle. You will find the strength you need. Make sure you look after yourself too.

I agree Facebook groups are so supportive. Also have you heard of a charity called Little Hearts Matter? My cousin's family get excellent support from them.
I've heard medical professionals say that of all the problems to have, heart ones are the best to have because they are easily fixed.

I have been where you are, albeit my child has a much 'worse' heart issue, but not the kidney one as well.

Four lots of open heart surgery at GOSH during their younger years were stressful but they now lead a normal life at 21, studying in university.

A Group called Heartline was useful at the time.

Don't think of it as God dealing you a shitty hand. Those dealt the 'shitty hands' self aborted during pregnancy. Your child was strong and fought.

You will get through this and medical science is improving at a faster rate than ever before in history. By the time their kidney fails (if it does) there will invariably be significantly better options available than there are today.

X

I'm so sorry, my baby has a kidney issue - also not spotted during pregnancy. It's not as serious as your sons by the sound of it but has involved surgeries and hospital stays. Sometimes I can't believe how unfair it is that my maternity leave is spent chasing up doctors, going to appointments and worrying. On the plus side I don't get too worried by baby sleep or colds or milestones!

I can't tell you not to worry but God the medical capabilities are amazing nowadays. Do you have a central contact or are you dealing with two separate teams for the cardiac and urology issues?

I’m so so sorry to hear. What condition does your baby have if you don’t mind me asking! I’m the same, I look at all these new mums with no worries in the world, yet I have the weight of the world on my shoulders 😪.

To answer your last question, he is seen my two separate teams. Both very helpful and great drs.

I’m so happy to hear your son is doing so well now that he is older. I can just imagine the heartache you felt with all these operations! I also agree with what you say about others aborting their pregnancy’s had they known about the issues.

All very comforting words, thank you 🤍 sometimes all it takes is hearing of people in similar shoes to give me the reassurance I need x

Hi OP, my baby needed open heart surgery at 5 months old for a condition that wasn't picked up before birth. We only found out when she started displaying symptoms and wasn't gaining weight.
I also recommend looking up the Facebook support groups for your baby's conditions, I found it so helpful to talk to others going through the same thing. I'm sorry you're going through this as a 1st time mum. The anxiety and uncertainty is just crushing. For us things got so much easier after surgery, it's so amazing what they can do.
I'm not sure where you live and whether you've had meetings with your surgeon yet, but I also found there was so much support available from the nurses once we reached this stage (we were at Leeds hospital)

@mumsy1621

I’m so so sorry to hear. What condition does your baby have if you don’t mind me asking! I’m the same, I look at all these new mums with no worries in the world, yet I have the weight of the world on my shoulders 😪.

They have an obstructed PUJ, we only found out after a massive infection which ruptured, sepsis, all the good stuff! About 45% function at the moment as a result of this and the scarring.

I try not to worry too much about the future as I'm not a doctor, I can't control it, there's others much cleverer than I who will do the hard work in getting them well. I can worry about advocating for them as that's in my control. I can also choose to soak up the joyful moments which feel all the sweeter knowing what they've been through.

I do feel scarred by what we went through and sometimes wonder if I should talk it through with someone, I wonder if that could be an option for you? There are techniques for dealing with worrying thoughts and it sounds like you want to talk about it. I imagine your GP should be able to refer you even if there's a bit of a wait

No advice or experience with this specifically but just want to wish you and your family all the luck and positive energy in the world x