This was my first pregnancy and everything seemed to be going to plan: no problems in the first 20 weeks. I felt the baby move for the first time at 17 weeks.  As I approached 30 weeks the movement from the baby were very feeble and were just the same as when I first felt them. I told the midwife every time I saw her but because I  was carrying so much water by this time she just basically fobbed me off, saying that because of the excessive amount of fluid I probably wasn't feeling most of the movement.  When she said that I just had to take her word for it.  I was now at 33 weeks very big and uncomfortable hardly able to walk through severe back pain and swollen leg's and feet, the midwife told me rest but this did not help. I got rushed to hospital with pre eclamsia I was kept in for 8 hour's confined to bed rest for the 7 weeks but 2 days later my water's broke. 

My husband phoned the hospital who told him to take me straight up to be assessed which we did I was assessed on arrival then they rushed me straight into a delivery room. The midwife said they needed to give me some oxygen for the baby. I knew I wasn't in labour so I didn't know what was happening, then the monitor kept alarming the baby was in distress and I was then prepared for theatre for an emergency C-section.  I woke up an hour after having Liam to find Phil my husband my mam and dad beside my bed Liam had been taken straight onto special care baby unit. Liam had been able to breathe unaided for 20 minutes then had to be ventilated due to poor respiratory, He has needed 24 hour ventilation since. Liam was born on 29 December 1993 at 11;45 pm ,the consultants didn't know what was wrong with Liam all they told us was that the outlook was not very good and every hour counted. We had to wait until Liam was 5 weeks old for him to have a muscle biopsy and we received the terrible news that it was Myotubular Myopathy x-linked and the doctor's told us they didn't hold out much hope of our precious son surviving, We were absolutely devastated. At 8 weeks old Liam had to have a tracheostomy because he still needed ventilating. We were having to carry on as if nothing was happening around us for Liam's sake we were still in a state of shock from Liam having a trachy which every one know's what that feeling is like your glad your baby has come through the operation ok but shocked to how they look.  We were soon encouraged to carry out all the new care's for Liam i.e. suction, trachy tube changes, chest physio, been taught how to resuscitate. This however passed in a blur as we looked to the future to be able bring home our precious Liam, but this was not to be as soon as the hospital had once expected as no one had ever been discharged on full ventilation before so it took an awful lot of persuasion to get our wish however it still took until 5 days before Liam's 3rd birthday then he was at last discharged. In all that time Liam has had recurring chest infection's, blocked trachy tube, displaced hips due to not weight bearing. Iin 1999 Liam had to have a double operation for a port a cath and a gastrostomy. Throughout all of this Liam has remained very happy, content, and bright little boy who loves attention he is also very tactile he loves a cuddle and kiss. Liam doe's get frustrated at times but we put that down to getting frustrated with limited movement, communication with the outside world, We know what Liam wants but people who come in to contact with dont know this is when he get's upset. Liam has been home know 4 years with minimal admissions into hospital we are able to take care of most problems here I can do tube changes iv antibiotics etc myself. Liam is now 7 years old still as precious as ever we have since had another baby we were very lucky we got a girl this time, it took a lot of soul searching before we dared going ahead and trying but we hit the jackpot twice, once with Liam then with Britney and we wouldn't swap either of them .if we could have one wish it would be to make Liam free of myotubular myopathy but as everyone out there who has a child with it this is never going to happen. All we can do is love, and cherish Liam as much as we can, because that is what he deserves and that was why we had Liam and Britney .

Copyright © 2000 by the Myotubular Myopathy Resource Group, Inc . Information on this website may be redistributed and copied freely provided that proper attribution is given.  This page was last revised on 05 Aug 2001. The Myotubular Myopathy Resource Group, Inc. is a not-for-profit organization under Section 503(c) of the IRS Code.

These World Wide Web pages are published by the Myotubular Myopathy Resource Group, Inc. solely as a service for interested parties. This is a lay interpretation and should not be considered definitive by any means. This discussion draws largely from the sources cited as well as the personal observations of the authors. We are neither doctors nor experts nor do we pretend to be. Any decisions on medical treatments, interventions, courses of action, etc. should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. The authors, contributors and the Myotubular Myopathy Resource Group, Inc. assumes no responsibility for the use of the information, observations or opinions presented herein.