TOTS 100 - UK Parent Blogs

Saturday, 27 August 2016

Baby After A Disabled Child

This year our lives were turned upside again with the arrival of a somewhat surprise new household member henceforth known as Lady P. My pregnancy last year came as a huge shock to us. I'll be honest, when we first realised there was something "wrong" with B, we became completely consumed with getting him 'better' which then became an obsession with getting him a diagnosis. The thought of having another child was furthest from our minds.

I had always thought in the back of my mind that I would have four children. My husband is one of four, it's a round number and well I just like things to be even. I'll confess that when it finally dawned on me how difficult life was to become with B, I grieved a little that my plans to further expand our family were over. I had to push the niggling broodiness far far away to the back of my mind and get on with taking care of B and his brother and sister.  This was surprisingly easy to do as life was hectic and chaotic. I resigned myself to being a mother of three and moved on. So fast forward seven years and I imagine my utter shock and surprise as discovering I was pregnant. At nearly 40 I honestly thought it wasn't possible. I cried at the doctors. I was convinced I was peri menopausal. I was absolutely in shock. The first thoughts going through my head were panic and terror. I don't think I'd ever been so terrified. I didn't know how to tell my husband and I kept this news secret for a while whilst I tried to get my head around it. How would we cope with both my pregnancy and a new baby? We had only just moved and the house wasn't big enough for a new baby and we had no family nearby. We were just at a stage where we were coasting and things were difficult but not impossible. I'd also started a part time job earlier in the year. The timing was the worst timing ever! (Or was it?)

When I finally plucked up the courage to tell my husband, of course he flipped out too. It was never going to be easy. But we're a team and we talked and talked and talked. Eventually, we started to make sense of it all. It might not be as hard as we first thought. We can do this. And most importantly, perhaps a new baby would indeed be GOOD for our family? I actually found myself getting a little bit excited. We agreed to keep our secret really secret. We thought that people were going to judge us and think we were mad! Yes we were crazy but it had happened and we had to get on with it. Ending the pregnancy was never ever an option.  I won't lie, I was absolutely terrified that the baby would be disabled too. Even though the odds of having another child with Phelan-McDermid Syndrome are 1 in 9 million, I was still worried and worried throughout the pregnancy. I could not believe we had found ourselves in this situation. The pregnancy was really hard. Much harder than with my other pregnancies which I could only put down to my age and being overweight. The typical first three months of sickness, the middle trimester where you start to show and feel a bit better just before the final trimester when the sickness returns with a whole host of other medical problems(!), sleepless nights and being too big to barely move off the sofa.

I had to be careful around B and things like putting him to bed and changing his nappy was really hard as he kicks and squirms and could easily hurt me by accident. My husband had to take on the majority of the B jobs. Every time we went to the hospital for appointments, we had to explain about B's rare condition to all the doctors, consultants and midwives. In the end they stapled a PMSF UK leaflet into the front of my maternity notes. I'm more of an expert than they are in B's syndrome but they took good care of me. I was refused a homebirth on medical grounds and whilst I could have argued this case, I conceded and let myself go down the whole hospital birth route. I was under consultant-led care and just went with it. I refused all testing in the end. Whilst there is no routine maternity testing for PMS, it is possible they could have taken a sample via amnio (the same as they might for Down Syndrome) but this itself comes with a small risk of miscarriage and we felt that it just wasn't worth the risk as the chances of this baby being affected was still so rare. I always say to people never tell me the odds because after what we've been through, it means nothing to me. I tried to enjoy the pregnancy as much as I could and it went so fast. Life is so busy and chaotic that I practically blinked and missed it. We kept it secret for so long that by the time I got to the final trimester, it seemed almost awkward to announce it so we kept it off Facebook and decided to go for an enormous 'tada' when the baby was born. We were still feeling worried/anxious that people would think we were crazy to put ourselves through this again. And true to form, there were some people who couldn't be happy for us. But we let this go.

So of course when Lady P was finally born in a quick dramatic entrance on the antenatal ward in the hospital, we were ecstatic. We announced her birth on Facebook much to the disbelief of our friends. There's not many fun surprises in life any more and it brought a great deal of pleasure to many many people, the majority of whom were really really happy for us.

The early days were again really hard but B took it mostly in his stride. In the first week, we brought Lady P home, he mostly ignored me and her. Even though he was unable to verbalise how he felt, I think he felt displaced and confused. I cried a lot. With the hormones and accompanying emotional rollercoaster, I felt like B was mad at me and I'd ruined his life. Things were never going to be the same again and it was all my fault. I had to dig deep to find the will to believe in my own advice I've always given my friends when they had babies:- time to get used to the new normal. Indeed, within weeks, life started to resemble some 'new' normality. B even started to cuddle up to Lady P in bed or pass her a pacifier or a toy. Absolutely everything we did was a new challenge. Do I leave the baby upstairs whilst I get B's breakfast? Who gets put in the car first? When we go shopping, we have to take two trolleys. B goes in the special needs trolley and Lady P in the baby trolley. Would you believe we even managed to go on a family holiday to Cornwall when she was barely a few weeks old. One of us pushes the baby in a pram and one of us pushes B in his wheelchair. When Phil had to return to work, I was terrified of how I would cope and didn't leave the house. I had shopping delivered to my door. When B wasn't at school, he would pull on the front door handle, desperate to go out. I actually only ventured out with them both recently after over five months and it was scary. B requires so much support that it's really a two-person job taking him out. This is something I'm working on.

My biggest fear right now is that there is something wrong with Lady P. Whilst I was pregnant, I telephoned and spoke with B's geneticist at St George's in  London. I told her I wanted to get the baby tested after it was born and she advised me against it, suggesting that I just enjoy the baby and to get in touch again if anything felt different. So now I watch the baby like a hawk and scrutinise every little thing she does or doesn't do. I try not to let it ruin her babyhood but there is this desperate need inside of me to see her meet her milestones. B's babyhood consisted of appointment after test after appointment after therapy. The prospect of going through that again makes me physically sick. I didn't get to enjoy B's babyhood. But you know what, even if there was something wrong with her, be it PMS or anything else for that matter, we are well equipped to deal with that and we would! At the moment Lady P 'should' be rolling but she isn't. It's around this same age that I started to realise that B was different to other babies. Once she conquers this skill, I think I will be able to relax a little bit. She already shows other signs that she's 'normal' like gurgling, babbling and bearing weight on her legs. I realise that the rest of ours lives are probably going to be a bit like this and I can't help it but that's the way it is.

B and Lady P are going to be best friends. I find myself wondering what she'll make of him as she gets older. We joke about how she'll get him into trouble when she realises she can blame him for things and he can't defend himself. I find myself in awe of my special needs mum friends who have an older disabled child and younger 'normal' children. But mostly, I feel so so lucky and blessed to get the opportunity to do this again that I will not take anything for granted.

When I sat tearfully in the doctor's office, clutching my positive pregnancy test, he said to me "a year from now you will have this beautiful baby and wonder what all the fuss was about". You know what. He was right.