The other day, I received something in my inbox which I just couldn’t ignore. It read “Comedy actress, Sally Phillips, left stunned by story of mother given 15 minutes to decide if she wanted to abort one of her twins suspected of having Down’s”.
Sally was not the only one who was left stunned after hearing the shocking story of a mother finding out she was pregnant with twins, and given just 15 minutes to decide if she wanted to abort the twin suspected of having Down’s syndrome during a a visit to the University of East London as part of a tour the University’s Rix Research and Media Centre, which specialises in media and communication technology for people with learning disabilities.
Claire Watts was 38 at the time, and went for her scan where the doctors told her she was having twins, which was a complete surprise to her. A bit later I went for another scan and that’s when a doctor told me one of the twins had unusual nuchal fluid, which can indicate Down’s syndrome. The doctor asked her on the spot if I wanted to have a termination, all the while there were a group of medical students standing there observing everything as part of their training.
I knew then I had to interview Claire Watts, to find out how terrible it must be to be given just 15 minutes to make a decision like that. So let us begin:
What was going through your head at the time when you were given just 15 minutes to decide to abort your Down’s baby twin?
Both myself and Gary, my partner, the twins dad, were incredibly shocked, confused and amazed, not only is there not any presence of twins in either of our family histories, there is also not any record of any special needs or syndromes in either of our families. However, Gary and I said “Bring it on. God wanted us to have twins, God wanted us to have special needs; we will fight the world.” We obviously were very scared, emotionally worried and unsure of ourselves and our family’s future. I was 38 and didn’t think I would be trying for a baby after this – let alone two; this was possibly our last chance and we could not risk losing one or both unborn babies.
Can you talk about what impact the way the doctor handled the situation had on you?
The Doctor did not have a very good bedside manner, caring attitude or empathetic nature; he was brusque, abrupt and nigh on condescending, he was more interested in being able to show the fifteen student doctors, who were in the room, how the appointment was going to be conducted for them, witnessing our very private consultation. He wanted the students to observe an Amniocentesis process. He wanted the fifteen student doctors to be have the chance and to party to experiencing a medical abortive practice.
He gave us fifteen minutes to discuss whether we wanted to go ahead with an amniocentesis procedure, this carries a risk of losing one or both babies.
Within that fifteen minutes we also had to decide whether to medically abort the twin, with 3mm of Nuchal fluid built up on the neck.
This was all very disturbing, emotional, morals and ethics being called into question. A decision that neither of us thought we would have to face.
We decided NOT to have the amniocentesis nor a medical abortion and that we would brave our future together with our twins.
If you could turn back the hands of time, how would you have wanted the experience to play out?
I would have wanted to have been more confident, telling the doctor that we did not need or want an audience and ask them to leave, no matter that they need to experience and learn through the hands on approach. I also think, looking back, that we should have been more determined and assertive in asking for more information, possibly requiring a second opinion or more advanced scan and not just accepting the word of the doctor
What do you wish you had known then what you know now?
That you are allowed to and should question professionals, asking for clarification and explanation on information that you are unsure of or did not fully understand.
That having a child with any disability, special or additional need is hard work and you need to have all the relevant information available to you. Speaking with other parents and carers who live and breathe it 24/7 who have read the book and own the t-shirt; who can pass on details that professionals, local authorities and others do not tell you. It is by talking to other parents that help you to come to terms with life and disabilities, the tips and tricks offered to make life easier and less stressful, the common sense and support from those who walk in similar shoes to you.
Looking back on the experience, what are you now grateful for?
That we chose not to have the amniocentesis.
That we chose not to have a medical abortion.
Had we not chosen the path we did, we would have terminated the WRONG twin!!!! The doctors told us it was twin one with the possibility of difficulties and the 3mm of Nuchal fluid build up.
We would not have our very intelligent, caring, beautiful, amazing little girl.
We would still have Alfie, the blue flavoured twin, who does have Down syndrome, Autism, ADHD, Global Development Delay and Hyper-mobility.
We would never have known. We would probably just assumed that they both had Down syndrome.
Even though they were in separate sacs and non identical, the odds of that slight percentage, that tiny chance, that risk of miscarriage with the amniocentesis and the risk of losing both pink and blue twin should we have decided that we wanted to abort.
So we are so extremely grateful that we did not take the Doctors’s advice.
What would you like to pass on to any parent who might have just received a Down’s Syndrome diagnosis?
Oh my, I could talk for ages but let’s start with:
- It’s not a disease.
- It’s a change of life, a variation in all your thinking and actions.
- It is an amazing journey and you will have the best tour guide ever.
- Save every picture and video in order for when you need to have the information, like I have had to do in making Alfie’s Wiki.
- Be strong.
- Be confident that there is no parenting manual you just learn by trial and error and by talking to other parents.
- Enjoy every minute.
- It is highly rewarding and immensely pleasing to be the parent of an awesome child.
Mum Claire and Alfie are supporters of the Rix Centre, where Alfie has learnt to build his own wiki – a personalised website with videos, photos, and audio, which helps people with learning disabilities communicate, learn, and share their lives and interests in an interactive way. For more information on the Rix Centre see here.