'People were surprised that we wouldn't abort our baby with Down's syndrome - it made me so angry'
03/11/2014: When Tom Bachofner, 38, and his wife Karen’s unborn child was diagnosed with Down’s syndrome, they didn’t question whether they’d go ahead with the pregnancy. Tom tells of the ignorance they faced, and the incredible moments they shared while bringing up Rosie…
‘The pregnancy was unplanned, so I’d already been through the standard worry, mainly about our financial situation. Then when we went for our 12-week scan, everything seemed fine and I felt happier. It was then my wife, Karen, now 39, decided to have the Bart’s screening test, which can indicate conditions such as Down’s syndrome.
The test is offered to all mums-to-be, but it’s not compulsory. I think it was instinct on her part – we’d declined it with our other kids, Harry, now 11, and Joe, eight, and had no complications.
Our results came back a week later with a 1 in 12 chance of our baby having Down’s syndrome. In the UK, 1 in 200 is classed as high, so 1 in 12 felt almost inevitable. When Karen called with the results, I rushed to be with her.
Karen cried a lot over the next 24 hours. I had to be strong for my wife, but I was lost. We had serious decisions to face – could we cope with a baby with special needs? How did we feel about abortion?
The hospital offered us an amniocentesis test, to find out for sure. This is where a sample of amniotic fluid is taken to give a near 100% accurate result. We took the amniocentesis and six anxious days later, doctors confirmed our baby would have Down’s syndrome. Karen and I both wanted to carry on with the pregnancy – we didn’t even consider the alternative, so when the question was raised by staff we dismissed it. They seemed surprised. I assume because a shocking 90% of UK pregnancies with Down’s syndrome are terminated.
What disturbed me was how much of the conversation the consultant and midwife angled towards termination. There were no positive words about what the future may hold.
When I asked if they had any leaflets, they just gave us a ripped piece of paper with a website scribbled on. I was thrown into confusion and anger and, looking back, those particular healthcare professionals could’ve swayed a couple less sure of their decision into making a choice they may have regretted.
Feeling positive
But knowing what we faced would hopefully mean we could enjoy the birth and the days that followed. This knowledge also meant a close eye was kept on the baby’s health – something that proved invaluable, as seven weeks later they discovered a hole in the baby’s heart.
I was in work that day, and received a call from a teary Karen. My reaction was to remain calm for her. It wasn’t until I put the phone down that the penny dropped. I was overwhelmed by my own ignorance of Down’s syndrome. What did it mean for my child’s quality of life? What would be their life expectancy? Would they ever be independent? I knew I’d love my baby, but was frightened by the unknown.
A couple of weeks after the amnio result, I came home from work to find Karen waiting for me at the front door. The hospital had called. “We’re having a girl,” she smiled. I fell to my knees with tears of joy and relief. I’d found something positive to hold on to. I’d always wanted a daughter, and in that moment I began to accept what was happening. I had a daughter to protect.
Our families and friends gave us tremendous support. A striking moment for me was when one of my lifelong friends said, “Don’t worry, mate, I’ll be here to learn things with you as you go.” It was exactly what I needed to hear.
A Rosie future
Rosie was born three days early. It was a quick, natural birth and Karen was able to hold her immediately. A paediatrician had been called as a cautionary measure due to her heart defect, but after he had checked her oxygen levels, we were able to go onto the ward. We took Rosie home two days later.
Although she slept well and was happy and alert, Rosie tired easily when feeding and put weight on slowly. When she was four weeks old, we were told she had a Complete Atrioventricular Septal Defect, which meant she had a large hole in the heart and a defective valve. Rosie would need open heart surgery to save her life.
At six months old, she went in for the operation. It lasted seven and a half hours. Karen and I walked hand-in-hand around the grounds. In my head, I was singing the lyrics, “Beautiful girl, stay with me.” I felt like I was communicating with her. When she came out of surgery, she was taken to intensive care. I sat by her cot and held her hand, and at that moment I realised the fact she had Down’s syndrome was insignificant.
All I wanted was my baby girl home safe. Thankfully, the operation was a success and she was home eight days later.
Rosie is now three and a half. She sees a speech and language therapist and play therapist – she’s also just started at our local mainstream nursery. Her brothers are doting, so I can see she’ll be protected as she grows up. I have every reason to believe she’ll lead a full and independent life.’
Karen’s story
‘Hearing our baby would have Down’s syndrome was a shock. I remember an overwhelming feeling of sadness and isolation. But once that first day passed, it hit me we would be OK and somehow it was ‘meant to be’.
Tom was very supportive… When one of us had a wobble, the other was strong. I feel fortunate he felt the same way about continuing with the pregnancy, despite the medical staff hinting towards termination. If we didn’t, we wouldn’t have Rosie now. I never doubted we would love our child, we were just beginning a new journey together.’
Down's Syndrome: What you need to know
Vanda Ridley, a spokesperson for the Down’s Syndrome Association says: ‘Whether your tests come back suggesting your baby may have Down’s syndrome or you find out after birth, give us a call on 0333 1212 300 and our information officers will be happy to talk things through with you.
If we can’t answer your questions directly, we will know who can. Remember there is support for you.’
- Around 1 in every 1,000 babies born in the UK each year will have Down’s syndrome.
- Today, people with Down’s syndrome can look forward to a life of 60 years plus.
- Many people with Down’s syndrome attend mainstream schools, pass GCSEs and live full, semiindependent adult lives.
- Around 50% of babies with Down’s syndrome also have a congenital heart defect and conditions that vary to different degrees of severity.
- One study said 88% of siblings reported feeling they were better people for having younger siblings with Down’s.
For info or advice on Down’s syndrome and related heart conditions, or to find out about local support groups, go to www.downs-syndrome.org.uk or www.dhg.org.uk