Pregnancy, my experience – Louise Berry-Corbett

I am a physio client at NMC and was initially diagnosed wth Limb Girdle Muscular Dystrophy.
In 1999 I had my first child and a couple of years later I was diagnosed with my condition. What prompted the diagnosis was that one day when I was carrying my son in a baby carrier, I fell whilst out walking, and my son nearly hit his head on the kerb. It really scared me and I got quite frightened. I was obviously concerned about having another child but was told that the risk of having a child with limb girdle muscular dystrophy (MD) was very low indeed.

With a forthcoming pregnancy, I was advised to change some of the medication that I was talking for my md, as they could have a potential damaging effect on the baby. I had a normal pregnancy, but the pregnancy did put a lot of strain on my back.

The specialist was worried about me having a natural birth because it could really tire me out and put additional pressure on my back. However, a caesarean section would also take its toll on my body. It was a bit of a catch 22!

At 37 weeks I was induced, my waters broke and I had an epidural. The surgeon checked that it was okay for me to deliver the baby naturally. I had 2 midwives and the baby, a little girl, helped push herself out! There was also a specialist team on standby just in case.

Afterwards, I could not really get up and down and holding her was quite difficult. Unfortunately it wasn’t possible for my partner to stay so he had to sleep in the car! I found that the staff did not really cater for “disabled” mums and the extra support that they might need. When I came home I had plenty of help from my partner and my family which made a big difference.

My baby, Lacey is now 3. She’s absolutely fine, although as you can imagine I watch her like a hawk! I have decided not to have any more children because I do not feel physically strong enough. My body has weakened and it would not be fair to consider another pregnancy.
My advice to others is

• Do not be afraid to ask for help.
• Ask the hospital how they will help support you and / or your partner.
• During the pregnancy think about taking well-being pregnancy vitamins.
• Remember it can take your body a lot longer to recover from pregnancy than someone who does not have muscular dystrophy.

I would still like to know what sub-type of muscular dystrophy I have. Earlier this year another muscle biopsy showed dystrophy in the muscles. I have now been referred for an MRI in Nottingham and if that doesn’t prove conclusive then it will be genetic testing. I would like to be able to pass this information on to my children.