Celebrating the almost-impossible

Agnes Fletcher, a disabled parent from High Wycombe, Buckinghamshire, UK, talks about her experience of going through in vitro fertilisation (IVF) with her husband, Adam Thomas, who has a spinal cord injury.

Agnes in the hospital holding her new baby.

Our daughter Cara Grace was born on 30 September 2009, 10 weeks premature and weighing 2lbs 9oz. I had gone for a routine scan only to be told that there were problems with the placenta. I had pre-eclampsia, a life-threatening condition, and the baby had to be delivered that day. I rang my husband and he rushed to the hospital. It was our wedding anniversary and Cara was born at quarter to midnight that evening.

A miracle

Her birth was both a shock and something of a miracle. I was 42, Adam 45. Adam is T4/5/6 complete. Conceiving naturally was never an option for us. When we met 16 years ago, having a child seemed impossible. We also agreed that, as we are both disabled (I have a curvature of the spine and problems with my hips), our lives would be easier if we were ‘child-free’.

Over time, I became an enthusiastic godmother and aunt but still wanted a child of my own. Adam was reluctant, always the sensible one of the two of us! However, he agreed to explore our chances. He talked to his consultant at Stoke Mandeville Hospital. We approached our GP to be told that we had to wait until I was 39 if we wanted one cycle of IVF to be funded.

Waiting

In the end, we had to wait two years from when we first approached the GP. That first cycle failed and, as time went on, I wondered whether we had been wrong to wait for funding, as the woman's age matters hugely when it comes to your chances of conceiving.

Most people are familiar with the process of IVF. However, because of Adam's situation, we needed to have not just IVF but also intracytoplasmic sperm injection, where individual sperm, their tails lopped off, are injected into eggs. The good news was, even after 25 years of injury, Adam's sperm were in good shape.

We had three ‘full’ cycles of IVF and on two occasions used frozen and then defrosted embryos. The physical and emotional impact of IVF shouldn't be underestimated. You begin each treatment by sniffing drugs to simulate the menopause, before injecting hormones for 10 days to stimulate lots of eggs. There's then a procedure where the eggs are removed before being fertilised and after a few days the healthiest looking one (or more) is put back. While most men just have to spend a little quality private time with themselves, Adam had to have a procedure to remove his sperm involving large needles, which caused swelling and an infection.

IVF dominated our lives for 18 months and the raised hope followed by disappointment when a cycle fails is very hard.

Almost impossible

It was on the third full cycle of IVF, and our fifth attempt, that we conceived Cara. The almost-impossible had happened.

The pregnancy progressed well and I felt great – partly because I felt so lucky and happy to be pregnant. I knew the odds, with IVF generally, and particularly for women over 40. The chances of conceiving are low, about 10 per cent, and the risk of miscarriage high. As each week went by, and the baby was still with us, my excitement and belief that it might all work out, grew.

However, at 30 weeks into the pregnancy, Cara had to be delivered. We'd not known before but the incidence of premature birth and associated problems is higher with IVF.

Cara spent six and a half weeks in hospital. She was tiny, fragile, like a little bird with very skinny arms and legs and a disproportionately large head. She wasn't able to suck so I had to ‘express’ milk every two to three hours, day and night for six weeks, using a machine. This was then fed to her through a tube.

Watching her in the incubator covered in wires to monitor her heart and breathing was very hard. I thought many times, “What have I done? How could I have been so selfish?”

When you have a premature baby in the neonatal unit, the doctors often say very little about long-term prospects, partly because they just don't know. It took quite a while before I thought, “She's going to make it.” And it wasn't until she'd been home for a month or so that I thought, “She's going to be OK.”

Happy memories

Adam's experience was different. He didn't know anything about babies before she was born. He was so excited that night and elated afterwards. I had a general anaesthetic and didn't meet her for 12 hours; Adam sat by her incubator into the early hours, with her tiny hand gripping his little finger. I’m so pleased now that he was so positive about her birth right from the start.

We never experienced any criticism about our choice to try for a child. The doctors and nurses at the Oxford Fertility Unit were very positive, as was our GP. There was a lot about the neonatal units at Wycombe and Stoke Mandeville hospitals that was inaccessible. I was able to do a lot for Cara on the ward but this wasn't possible for Adam. However, the staff were wonderful. They helped him to have lots of ‘skin to skin’ contact with Cara right from the start.

Research shows that lying on their parents’ bare skin helps to regulate premature babies’ heartbeat and breathing and leads to better long-term outcomes. Adam spent many hours ‘kangarooing’, with Cara nestled inside his shirt, and these remain incredibly happy memories.

New beginnings

Cara is still small for her age but is a happy child, fascinated by the world. The road we have chosen isn't for everyone, and isn't possible for everyone. For a long time it looked impossible for us. I feel so lucky, despite the bumps, that it has ended this way – or rather begun.

Agnes and Adam's story first appeared in the August 2010 edition of forward magazine, published by the Spinal Injuries Association (SIA), the leading UK charity for spinal cord injured people. For more information and to download the bi-monthly magazine, visit www.spinal.co.uk

First published DPPI Journal, Issue 73: Summer 2011

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