Some more members share their stories in their own words…
Clare & Nick – Kimberley’s Story
Kimberley is our beautiful daughter, she was born in February 2012. We first found out she might have T21 when we went for the ultrasound scan at 12 weeks. Full of eager anticipation we caught the first sight of this precious addition to our family. Being a biology teacher my husband asked lots of questions to the sonographer, I just hoped everything was alright with the little bean growing inside me. Before going in for the scan we’d paid £1 to the receptionist for pictures of our little foetus to take home with us, our first photos to show the family, how exciting! Following a fairly long ultrasound my husband and I were asked to wait in an adjoining room. Eventually the sonographer joined us and created a computerised graph. I looked at the graph and saw a straight line, then I saw a marker high above the line. Then began our long journey into the unknown. The line represented the normal ‘nuchal translucency’ measurements. The high marker was Kimberley’s nuchal translucency (which actually is the back of her neck). She had a reading of 4.9mm far above the expected 1-2mm of most babies. Another calculation was performed, based on my age (42yrs) and with the click of a button we were facing a 1:2 chance of having a baby with Down’s Syndrome. Shock, numbness, confusion, fear, sadness and unbelief were just some of the emotions I felt. I think Nick held my hand throughout – he’s always been incredibly supportive. The nurse looked terribly sorry for us and on departing she said, ‘You probably won’t want those photos now’, and in our bewilderment we agreed that we didn’t want the photos of our little one. It wasn’t till we left the hospital that I started to cry, and I can remember the reason I was crying was because I had rejected Kimberley by leaving her photos behind. We contacted the nurse and asked her to send them to us, which to her credit, she did. My hubby is a rock. He got straight on to ARC (antenatal results and choices) and the DSA, spending hours chatting to different people. A scan at 16 weeks confirmed that our baby also had a serious heart condition, pushing our chances of having a baby with T21 up to 80%. At this point we were offered an amnioscentisis which I declined, as I didn’t want to risk miscarriage (although the risk is very low). Sadly we were also at the receiving end of some ill conceived and ill timed opinions on Down’s Syndrome – from our highly qualified sonographer. She seemed to be indicating that we’d be better off terminating the pregnancy, as we’d have no quality of life ‘caring for’ our child. I sat silently, concerned with the heart diagnosis, while my husband gave her a piece of his mind. She ushered us out and advised us to have the rest of our scans locally, thankfully we did just that, and that’s when we began to meet some really great people. Determined to get a better understanding we arranged to meet local families who had children with Down’s. I remember meeting Ruth who was about 3, she could talk and read and communicate well, she was a delight. Her mum ran local groups which I joined up with for the duration of my pregnancy. I even did a makaton (sign language) course! Kimberley was born in a birthing centre, with only a hand held heart monitor. I had to fight to get the birth I wanted for her, as most obstetricians I met thought she’d be a high risk birth. As it turned out she arrived quickly and with no complications. She had her heart operation (at 4 months old) and is a bonny and beautiful little lady, and we are a happy family!
Jade, Lauren & Kyan
Lauren and I had been together for six years when we decided it was time to share our life with a baby. Seeing as we are both women, we needed to have IVF treatment in order to fall pregnant. It was a LONG process, but Lauren was inseminated in January 2011, hand two weeks later we got the news we had waited so long to hear – she was pregnant!!
Seeing as we had undergone IVF treatment, we had more scans than usual. All of our scans went well; we had the blood and nuchal tests done at 12 weeks and they came back ‘low risk’ for Downs Syndrome. We were relieved and couldn’t wait to meet our gorgeous little baby.
Our 20 week scan was a bit of a shock. By pure chance, the sonographer picked up what they suspected to be a ‘double-bubble’ (stomach problem – better known as duodenal atresia). She sent us home (with instructions not to ‘google’ anything) and then we were told the specialist wanted to see us to carry out a more detailed scan. He confirmed the ‘double-bubble’ and seeing as we had spent the night ‘googling’ we knew this meant there was a 30% chance our baby had Downs Syndrome. They offered us an amnio then and there, and took us into a room to explain what the procedure was and gave us information on it. We opted to have the amnio. We had no intention of terminating, but we wanted to know the diagnosis so we had time to prepare. The specialist checked for all of the other usual markers for DS and everything came back normal – nuchal fold, femur length, nasal bone etc. So we weren’t really worried.
As you can imagine, the phone call we received a few days later changed our lives forever. Being told the test was positive and our baby had Downs Syndrome was something you never expect or want to hear. We sat on the couch and cried and cried. We told immediate family straight away, who reminded us of our options and told us they would support us no matter what. Of course, we were always keeping our baby, but it is scary how doctors can offer to take your ‘problem’ away just like that. We didn’t see it as a problem, just a challenge. And as our lovely midwife at the hospital kept saying to us – no one can guarantee a healthy, well behaved, intelligent child.
The support we found online was amazing. We joined the Down Syndrome Association straight away, and they sent us loads of information. We stalked forums and websites for weeks, and even went along to a Downs Syndrome support group to meet some families before our baby was born. Meeting all of these wonderful people before Kyan was born made things a lot easier. We felt well prepared and very excited about the challenges that lay ahead.
Once Kyan was born we were taken to Great Ormond Street so they could fix his stomach. The operation went smoothly but lots of other things kept happening – nothing that could be explained! The doctors put it down to the fact that he was 5 weeks premature. After 5 weeks in hospital we were able to take Kyan home. Besides his severe reflux (and being stuck at home for 5 months!) he didn’t have any other major health problems. We have been lucky.
We now have a very healthy and happy 10 month old who takes all of our time and attention and we wouldn’t have it any other way.