For 6 years Richard and I had been trying for a baby. Our first IVF attempt was a success but we sadly lost that little one at 9 weeks into the pregnancy. After a couple of unsuccessful attempts, I found I was carrying twins, we were ecstatic at this news and I was determined we were going to go full term (37 weeks for twins) and all would be ok.
At my 12 week scan I got to see how big the little miracles had grown and was also advised that I should have the ‘screening’ test done. I wasn’t even sure what I was being tested for, but as I was 41 years old, an IVF pregnancy and it was twins I was given the advice that I ‘should do this’. So, I duly had the blood test done. The next day I got a call from the hospital to say that the results had come back and that I was a 1 in 150 ‘risk’ (HATE this terminology) of my babies having Down Syndrome. I knew families with children with DS but I really didn’t know much about it. I was sent some information which really scared me – it was very negative and told me that my children could potentially have heart problems, be deaf, have stomach issues and other stuff.
I had a follow up appointment with the Consultant who wanted to have a look at the babies, which he did quickly and very efficiently – this man was a true pro! He explained to me that the hospital had in fact worked out my results incorrectly and so twin 1 was now a 1 in 80 ‘risk’ and twin 2 was 1 in 8. He explained that the only way to be sure was to have the amniocentesis test done – which carried a 1 in 100 risk of miscarriage – I declined that straight away! He told me about a new blood test that gives you a 90% accurate result but I would have to pay £500 to do that – and that if twin 2 was confirmed as having DS I could opt to abort the baby. At this news, I burst into tears – how could I ever get rid of this little baby who I had spent 6 years waiting for?! He looked so relieved at my response and offered further detailed scans to look at their hearts, lungs, stomach and growth.
The scan at 17 weeks showed that both babies were doing well, they were the right size for their gestation and all their major organs were in good working order – what a relief! We also found out that twin 1 was a girl and twin 2 a boy! A subsequent scan showed twin 1 was all fine but twin 2 showed some ‘soft markers’ of DS – sandal gap toe, a larger head, short legs. So, we were pretty sure at this point our little boy had DS.
For us knowing in advance made things easier as we were able to get our heads around DS quicker. We had waited 6 years to get to this point, we had been through quite a lot already, and we knew we were strong enough to deal with this too.
At 26 weeks we found out our little boy, had polyhydramnios – this is when the baby is not processing the fluid in their sack correctly and it leaves them with too much in there. This meant that he was pushing down on our little girl, and the hospital were concerned that I would go into labour at any minute. I had to have steroid injections, in case they did arrive early as this would help their little lungs develop better. I was in and out of hospital every few weeks for scans to keep an eye on me and told to rest as much as possible – not easy when I was so uncomfortable and couldn’t sleep much!
I had a C-Section at 35 weeks and I have to say I was very well looked after and I felt like a rock star – we had two of everyone in the room, two surgeons, two midwifes, two special care nurses etc. When we walked in I burst into tears upon seeing the two little cots – this was really happening!
Richard went to meet the babies whilst the doctor attended to me and he took pictures to show me – they were absolutely adorable. We could see straight away Jack had DS and we were totally in love with him!
We spent a week in hospital – the twins were in special care for a few days. The Doctor came into our room and was looking very serious and sad. She said she was sorry to tell us that Jack does have DS – I (typical me, always jump in quickly) immediately responded, “Why are you sorry? We have waited 6 years for these gorgeous miracles and Jack is healthy (bar not wanting to feed from a bottle) and he will be amazing!” She looked so relieved, obviously not how most parents react to this news. We had known for some time it was likely he would have DS and we also had waited so long for them to be in our lives, that to us it didn’t matter and we would deal with whatever we had to face.
We spoke to our family to share the news we had been given – they were amazing and got their heads around it quickly. My sister used to work for Mencap – so gave us as much support as she could, and still does. We discussed how to let everyone know about Jack having DS and we penned an email/message to our closest friends. Every one of them came back with kind words and lots of support. Richard’s boss sent a tear jerking message to him – which has stuck with us: “You’ve been blessed with an extra special gift to look after and love that most people will never have the pleasure of experiencing, the development of whom will inspire and amaze you each and every day.” Both Richard and I feel truly blessed to have been given the responsibility of being parents to Jack.
When we got home it was scary and amazing all at once! We joined PSDS, a local charity supporting families with children who have DS – this has been a life line as we have contact with other families.
We go to a lot of mainstream groups and soft play areas – I think this is good for Jack and indeed for other people to have their eyes opened to DS and that Jack is a little boy, after all. Life with twins is fun and Jack has made it even more awesome! We have challenges that we face and overcome, pretty much like most families, and we have lots of love, laughter and hope. There is loads more for us to come.