Parents of medically complex children

[Thevikingchild]

Just looking for a hand hold really and some practical advice. I feel so overwhelmed by the reality that DS (10months) is very medically complex and so vulnerable to becoming unwell. He spent 5 months in the NICU after birth as he was born very prematurely and had multiple illnesses and injuries. It was a very rough time and he was not expected to survive but miraculously did. He has multiple diagnoses and needs oxygen at home so is incredibly vulnerable and medically complex- our GP refers him straight to A+E whenever I have been there with a respiratory issue as they are not confident in diagnosing or treating him 😞 Since coming home from the NICU he’s had two short hospital stays for chest infections and then a 6 week stay in the PICU/HDU after he contracted a nasty virus and became so unwell they had to intubate him.

since he has come home from being in the PICU he has lost a lot of the skills he had before like being able to feed and holding his head up with ease. He also isn’t babbling as much as before. The doctors and nurses reassure me that he will gain those skills back and because he was so poorly it will just take extra time for him to get back to his usual self. I worry he won’t gain these and other skills back.

other parents of medically complex children, how do you cope with everything? The fear that he will deteriorate so rapidly again and be taken to PICU? The fear that something simple like going out to the shops could mean he contracts another virus that floors him? I currently feel so anxious about him catching things that I struggle to take him out other than for appointments in order to keep him safe. Also when we go out people often stare at him because he is a tiny baby with oxygen and they often want to come say hello as he is so small. The weight of it all is so heavy, I feel so sad for my DS that he has to fight so hard with his health. Luckily he is such a happy, sociable boy so doesn’t seem too affected by it.

I have been referred for therapy via the GP however I am hoping other parents might have some practical advice or just kind words.

Thank you if you read this far x

I don't want you to sit on 'Unanswered Threads' as my heart goes out to you.

I am no, and haven't been in your position, but, through work have come across various Charities and Support Groups that might be able to support you.

SWAN UK (Syndromes Without A Name) is actually set up for children with genetic disorders or syndromes so rare there aren't separate support groups. There is a website and also Facebook Group and I'm sure you would be welcome there.

Bliss is specifically for 'Babies born Premature or Sick'

Rainbow Trust is for Families of Neo Natal Babies.

I'm sure there will be others, but hopefully this bumps your question so it is seen by parents who have been in your position.

Do you have any support? Our local hospice is a really useful place for us, my little one has some overnight care there and, when he was younger, we attended groups there. It was lovely to be with other parents and carers who just get that fear.

Thank you so much for this and I appreciate the kindness. I will definitely have a look at these links, we are already involved with Bliss but haven’t looked at the others 😊

We have an ex nicu group that meets up every so often but otherwise no. It’s just that isn’t it, being with people who get it is so important! Thank you for your reply 😊

Have you looked to see if there is an Opportunity group near you? They hold sessions for young families, the staff do activities with the children while the parents can sit and chat or get involved too. They are lovely groups, the staff and other parents are really supportive.

Hello OP

I came across your post when I googled 'medically complex child'. I am slowly coming to terms with my child being categorised as so - I read your post with him snoozing on my chest in a children's hospital. He is 4 months old, 12 weeks corrected, and has no diagnosis so far (broad range of generic testing has been done and everything so far is negative, but more tests may be ordered) but so far his central issue is that he cannot get off high flow respiratory support. He has never left hospital.

I don't have advice but I see you - and I think if we ever flipping leave hospital I will be in a very similar place to you mentally and emotionally. It absolutely sucks. I have no advice to offer over and above the good advice you have received here - make the most of the links you have with people on similar circumstances- could you do one on one coffees with members of the ex-NICU group in addition to the larger meetings?

Bank that your son is happy - this shows what a smashing job you are doing. It's often said that our kids don't know any different and we're the ones bearing the pain and anxiety, which is crap for us, but a comfort on some level. On the people in public coming over to your pram to say hello/take a look at baby, do whatever you need to to protect your peace of mind. I sometimes think what I might do if my baby comes home on oxygen and I get comments, and I think having gone on this 'journey' has finally cured me of my people-pleasing - I don't care what anyone else thinks, my only obligation is to my child. If people coming over stresses you out, feel free to adopt a 'do not approach me' face, I think I even saw online someone with a sign on their pram asking strangers not to touch their baby. Do what you need to do to protect your peace and your baby.

Sending you all the luck and love xxx

Also look up 'Miracle Moon' - they offer support services and a forum for parents of former NICU babies x

I’d never heard of these groups but I’ve just checked and there are two near me. Thank you so much!

It’s so tough isn’t it, and hard to keep up the positivity and hope when you can’t see a different future for your child other than medical issues and the hospital!

I’m sorry your LO is struggling still but like you say it is us that shoulders the anxiety and worry not them. I definitely do want to meet up with other people, I reckon in the future I’ll make it happen.

That is so true, you truly don’t GAF about people pleasing when your child has been and continues to be unwell. We actually have one of those signs…turns out a lot of people can’t seem to read it 🙄 I am going to have to perfect the resting bitch face for our trips out!

Thank you so much, I hope you and your LO thrive and manage to get out of the hospital soon! xx