Julie and Marc’s Story
Julie and Marc’s Story
Marc and I didn’t start trying for a family until I was 34. Nothing happened for two years then doctors found I had blocked Fallopian tubes – a real blow. We were advised to try IVF straight away.
IVF is not a comfortable way to conceive. I had to inject myself daily, had hot flushes and my ovaries swelled to the size of oranges. But we only had to do it once. After implanting two eggs, we had to wait a long, hard four weeks to find out I was pregnant – and our first scan revealed twins. It was so bizarre seeing those two kidney beans on screen with their pulsating hearts, but my pragmatic side wouldn’t let me believe this pregnancy would end with a baby. Maybe it was a woman’s intuition.
My pregnancy was going to plan until, at 23 and a half weeks, I went to the bathroom in the night for a pee, but felt like I was still peeing when I went back to bed. I woke Marc and we rushed to hospital. Because I’d leaked fluid I was classed as being in the early stages of labour. The babies wouldn’t survive if they were born at this stage and technically would be classed as a miscarriage – it’s not a ‘viable’ birth until 24 weeks. Thankfully, as I was virtually at 24 weeks, the doctors gave me surfactant, a type of drug to help the babies’ lungs mature so they’d have more chance of being able to breathe if born. I spent three days in a ward with women who’d be huge one minute, go into theatre the next, then return with a baby. All I could think was my two probably wouldn’t make it.
Three nights later, at one day over 24 weeks, I was watching TV when I suddenly felt weird, with rushing pains. Four hours later, at just past midnight, our first child, Jack, was born, surrounded by the entire staff of the neonatal ward. The birth was easy, but the news was the most devastating any parent can hear. Jack wasn’t strong enough to survive. So he was wrapped in a towel and for two short hours I held him as he faded away. I can’t begin to describe how awful it was but, with hindsight, I’m so glad I had my time with him.
Just 30 minutes later, Jack’s brother was born. I remember he made a squeaking sound – a good sign of life. He was a healthy colour and trying to breathe, but I didn’t get a chance to hold him before the doctors whisked him away from us to the Neonatal Intensive Care Unit. The first I really saw of our new son was when one of the nurses brought us a photo. I was still lost in grief for Jack, but when I saw my other baby, all covered in wires, it jolted me into action. Our baby was so little, about the size of a bag of crisps. But I remember he had really long fingers, just like me. The doctors told me to go back home, bring back an overnight bag and prepare for my baby to die. While I was there, I cleared everything connected with babies out of the house, because I was convinced I wasn’t going to be bringing one home with me.
We decided to name him Marc after his father, figuring he wasn’t going to survive, so we’d never have to cope with the hassles of having two Marcs in the family. We sat up all that first nigh and, miraculously, he clung to life. But next day we had another setback – Marc had had a bleed on his brain. On day three we considered withdrawing care as we thought it too cruel to inflict all this pain on such a tiny being. But one of the consultants said to me, ‘In my heart I just don’t feel we’re there yet.’ He wanted to try one final concoction of drugs. Thank God he did because, within a few hours of having the drugs, our baby’s vital signs had lifted.
He was still on life support, and had already had a severe brain bleed, then went on to suffer chronic lung disease, renal failure and heart problems. We were facing having a child with cerebral palsy, blindness, deafness and learning problems, but he was gradually getting stronger.
One of the biggest problems in the early days was feeding Marc. The doctors couldn’t get any more tubes into his tiny body to give vital nutrition, so they asked if I could express breastmilk so they could feed him through a tube up his nose. As I was only in my second trimester it was incredibly hard to express, but I pumped for all I was worth, every three hours, day and night. Here was something only I could do to help my baby survive – finally I felt useful. But, wired up to an electric pump on the ward and watching a woman next to me breastfeed her baby, I couldn’t stop thinking how unfair it was and I was determined to breastfeed my baby.
Marc was 1lb 6oz (640g) when he was born. The magical weight for premature babies is 2lb and by 8 weeks he was getting there being fed only breast milk. He’d been transferred to a breathing machine called CPAP, rather than life support, which meant he was actually breathing on his own. Then, one week before my due date, he finally came home. It was a moment we didn’t believe would ever come and of course we were ecstatic, but terrified too. Our baby was still only 4lb and for the last 12 weeks whenever anything had gone wrong, trained staff would come running, but now it was down to us. It wasn’t until Marc was about 6 months old (and had been home for three) that I finally suddenly got a feeling this little fella might actually be here for ever.
Three and a half years on, that little fella is my darling toddler. He’s delayed developmentally (he was nearly 2 before he walked and he has a six-month speech delay) but there are none of the problems we’d been warned about. I believe his progress is due to long-term breastfeeding, intensive therapies and conductive education. I’d encourage any parents in the same situation to seek as much help as they can. Marc’s still classed as Special Needs, but that means we get more help. We have a happy little boy who loves to come with us to the churchyard where Jack is buried. We call it Jack’s garden and Marc loves kicking his ball about there. After all the heartache, our family is complete. This year we decided to let the embryos we’d had frozen go to medical research. We’re so grateful for our little boy and we feel we pushed nature far enough first time round, we don’t want to risk it again.