Friday, 31 July 2015

My experience of pregnancy- Karen Pritchard

I was diagnosed with Hereditary Sensory Motor Neuropathy as a teenager. In 1999, after further tests my diagnosis changed and I was then diagnosed with Distal Spinal Muscular Atrophy (SMA). In 2007 I gave birth to a baby boy.

I had a normal healthy pregnancy and the Consultant did not detect any abnormalities whilst I was pregnant. I was using my wheelchair at the time. I had a planned caesarean section at 39 weeks and was safely  delivered a baby boy. As you can imagine I was relieved when the heel prick test at birth (for MD) came back all clear.

I must admit I didn’t really think about passing on my condition and Evan showed no signs or symptoms. I was told to “go and live your life”. I do sometimes worry though if things might manifest  themselves as he becomes a teenager.

When I was pregnant I concentrated on getting through the pregnancy and did not really have any plans in place for afterwards. I didn’t really think my disability would affect me that much. I came down to earth with a bang. It was hard both physically and emotionally. I had a new baby to look after, was recovering from the birth and was also trying to cope with on-going pain from my condition. I suffered with postnatal depression and found it very debilitating. I found it really hard just coping day to day and looking back, feel there were times when I didn’t really live life but just existed. It got to the point that I had to spend some time in hospital. My husband Alan was a constant source of support.

Thankfully I had a good midwife and was referred to “Home Start”. I found this service so helpful and the person that I was allocated was fantastic. She helped me with all the practical things and as Evan got older she was such a valuable support for me. We had a good relationship and even though I no longer receive this service the lady and I still meet up as friends regularly. I sought much support from NMC and this was invaluable and got me through some really tough times. I was in touch with other women who had suffered postnatal depression, and it was great to be able to seek support from people who really understood. I also gained knowledge and advice through groups including PANDAS *and NETMUMS * which I found really helpful.

The pregnancy did take its toll on my body and as a result my body has become weaker. However, having a child was the best thing my husband and I ever did. Evan inspires me and when I am having a bad day and in pain he spurs me on! He is a grounded person. Kids get it and understand your circumstances.

My advice to others thinking about a possible pregnancy would be to try and plan ahead and think about the support you might need once the baby is born. Do not be afraid to ask for help and support. It is far better to do that, than feel lonely and isolated. Do remember that your mental health is important too!

Grab the opportunity to enter the world of motherhood with both hands – Dawn Wilbur During my life I have always had the attitude that dreams can become reality - barriers can be broken. I’ve had 2 babies. A stillborn baby daughter called Sky in February 1995 and in 1992 an incredible baby boy, Graham, who is now 12 years old. He is my greatest ever joy on earth. Both babies were born prematurely due to a condition called pre-eclampsia This was not connected with my condition Spinal Muscular Atrophy (SMA). Sky was born naturally and Graham by caesarean section.
Fortunately, in the early stages of pregnancy, I was able to benefit from weekly swimming sessions and regular physiotherapy sessions.

During my pregnancy with Graham, I had an amazing obstetrician who supported my husband and I throughout the pregnancy. Although my lung capacity is almost half that of a lady unaffected, I had peace of mind as I had regular lung function appointments at North Staffs. The reason for having Graham there was precautionary in case my lungs became problematic. On 4th October everything went really smoothly. Graham was born at North Staffordshire Hospital and went straight into the Special Care Baby Unit (SCBU). A couple of days later he was transferred to Chester SCBU as this was nearer home. For the first two weeks we visited him daily, then we stayed at the hospital for a week, in a room with Graham. This was perfect as they taught us first aid, bathing and many new born baby parenting skills. Once Graham had gained adequate weight we were able to bring him home. That was just a wonderful moment. The midwives from SCBU visited us regularly and then subsequently the health visitors.

I became a member of a national postnatal group and a local mother and toddler group. I mainly sourced information from other parents and I also joined some pertinent websites.
Pregnancy with a physical disability - www.apa.org

*Homestart – www.home-start.org.uk  - A nationwide organisation that offers help/ a companion to parents who have a disability.
*PANDAS – Pre and Post natal Depression Advice and Support www.pandasfoundation.org.uk

Next Steps
If you would like to speak to someone at NMC who has gone through a pregnancy, then please contact Sue Walker at NMC in the first instance. Tel. 01606 860911

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