I am a mum to a medically fragile child... ask me anything

Did you know there was anything wrong with him before he was born?

Whats the proudest moment you've had with him, in terms of development and defying medical prognosis?

No.

My 20 week scan was fine. "On average, only 1 heart baby in every 3 is detected and most heart babies are born with undiagnosed heart defect". The defect Luke was born with is very difficult to detect and it was only when Luke had life threatening symptoms that he was scanned. The congenital respiratory defect he was born with can't be detected antenatally and he also acquired problems due to complications during his cardiac surgery. We also had the added complication that Luke was born early and small for dates so thsi multiplied the problems and type of treatment he needed.

Double post

personally- getting him home when he was over a year old. I'd waited so long to walk out the hospital with him. I just never knew if it would happen. I'd watched so many mums walk in pregnant and go home with their newborn babies, arms full of presents, balloons and teddies. The day he came home I treated myself to a 'It's a BOY' balloon to walk out with. we decoarted the house with banners just like you would to celebrate a new baby. We put all the congratulations cards back up that we'd recieved when he was first born.

Are you hoping to try for a little brother or sister for Luke?

no plans. the last couple of years have been really stressful for me and my husband and we really need to invest some time and energry in our relationship. I was also very ill with pre eclampsia when I was pregnant, which was the reason Luke was born so early and me having to stay in hospital and another early baby in NICU whilst Luke still needs special care at home would be difficult.

He would make a fantastic brother though, so never say never, but it's not possible right now.

Firstly, welcome again to OT, Secondly your picture ofLuke os gorgeous and thirdly I really admire you and your husband, it must be so hard at times.

Now, my question. Now that Luke has come off ventilation, will there be a chance that he can learn to talk/make more sounds?

I can only imagine how difficult it must be for you and your husband but I hope you can both continue to be strong for Luke. Is he due to have more surgery as he gets older?

I presume that's a photo of him as your avatar, it's a really cute photo!

He actually learnt to walk and talk whilst on the vent. he's meeting all his milestones, just a year or so later. He is amazing! His speech is improving all the time and he can walk and run sort of. He has hypermobility and low muscle tone, probably due to the fact that he spent so long sedated and lay in cot.

This is Luke's story 0-2 yrs in photos

https://app.photobucket.com/albums/af40/Susan_Luke/Luke%200-2%20years/?albumview=slideshow

He had surgery this month to repair the hole where the breathing tube was in his neck. He will probably need more heart surgery when he is older, but techniques are improving all the time and it's possible that it can be done via a catheter than open heart surgery. he's had 5 major surgeries in the last 3 years and probably 8-10 GAs so we'd quite like a rest from operations for now!

Hi Carole,

I've followed Luke's story over on BT and I've said before but I shall say it again, he's such a cutie! He's going to be a proper heartbreaker with those eyes when he's older!

Are you able to start making more time for you now? How much care does Luke still require?

Oh wow, I'm in tears after watching that. The poor little fella has been through so much and he never stops smiling!! You and your H too! He didn't seem too impressed with his first feel of grass though! ?

What a beautiful family, he's such a wee poser!

I hope he continues to get stronger everyday.

I just wanted to say I have first hand knowledge of this kind of heart surgery. Its truly amazing. I have had OHS and Key hole.

I am certain Luke will surprise you in every way possible as he grows up and medical advances are so impressive these days. Its sounds like he is doing so well already ?

Carole, I am another one who has followed your story over on BT (crazy stalker alert) and I have to say Luke sounds inspirational and, like Cricks said, a real little stud! You are also extremely brave, I'm not sure I could have coped in your shoes.?

Carole, does it annoy you when pregnant mothers say "I don't mind what I'm having, as long as it's healthy"?

After looking at the pictures, it amazes me how much you've all been through and how truly brave you are.

I have only one question - where can I get a set of lashes like that?!