Family Stories - Liam

Family stories from the Myotubular Trust

Family stories from the Myotubular Trust




Family stories from the Myotubular Trust

Family stories from the Myotubular Trust

Liam was born on Wednesday 29th December 1993 at 11:45pm weighing 4lb 11oz 7 weeks early. I carried alot of water whilst pregnant with Liam which nobody picked up on, and I lost over 5 stone the night I had Liam which shows the amount of water I carried. Liam was born by emergency c/section he was floppy and breathing for the first 20 minutes then became blue and had to be ventilated, as I had been knocked out I knew nothing of all of this, the doctors told my husband that they didnt think Liam would be still here in 12 hours!!

We had many emergencies with Liam in the early days, Liam was 5 weeks old when he had a muscle biopsy then the news we had dreaded Liam had Myotubular Myopathy (x-linked). The Consultant told us to love Liam as much as we could because he wouldnt live for long, and our whole world came crashing down round us in those few minutes. The doctors told us they wanted to perform a Tracheostomy which they said would be better for Liam as he was 24 hour ventilated, Liam had the Trachy done at 6 weeks old.

Once we were used to the trachy tube we began learning all the skills off the neo natal staff ie doing trachy changes, suction, physio, putting nasogatric tubes in and bolus feeds, although myself and my husband learnt all this Liam was in hospital for just days short of 3 years as no child was on home ventilation. Liam was the pilot case so with all the normal ups and downs of chest infections and having to have his trachy stoma refashioned we were trying to find care staff who we could train up to help us care for Liam at home. But w ith are staff in place we were now able to take Liam home on christmas eve of 1995 just 5 days before his 3rd birthday we were all overjoyed. Liam loved being at home and came on leaps and bounds, Liam still had to have surgery to put a Gastrostomy Button in as he was now 5 Years old with his NG Tube still in, then at the same time they decided to do a Port a cath as I do all the IV antibiotics at home and Canula's were getting harder to site as all Liam's veins were all damaged through all the years of having IV access.

We decided to have another baby and when I fell pregnant i had to have the CVS test to determine what sex the new baby was, we were elated when we found we were having a girl. Our family was then complete so i got sterilised the day I had our daughter Britney. Life is very hard at times when Liam is unwell we dont get any warning he will just deteriate before our eyes, we have lost count of the number of times we have nearly lost Liam but we just thank our lucky stars that we still have our precious gorgeous son with us. Liam is such a fighter we say he fights every day to stay with us while every day we fight to keep him here.

Liam is so full of cheek, he is so happy all the time even after a lot of sugery he smiles we are so blessed to have Liam and Britney and we wouldn't swap either of them for the world, all we wish is that this horrible condition had a cure. I even asked the doctors about muscle transplants because i would give my son every muscle in my body if that would make him better but the doctors said that wasn't possible.

Liam is now 17 years old and loves his little sister Britney who is almost 11 now, Britney is really brilliant with Liam she knows when he needs some suction so will tell us, she likes to help getting Liam dressed and sits and reads to him which he loves just as much.

Thank you for letting me share our story with you all

January 2017

Liam was fit and well and wasn't poorly at the time he suddenly passed away, but due to a sudden reaction to a medication that was reintroduced after almost 4 years, Liam suffered what they say is anaphylactic shock resulting in Liam's sudden death. We are totally devastated without Liam.