This is my account of carrying a pregnancy with a high risk of Down’s syndrome. It is intended to provide as a support for anyone that ever goes through the same. There is no judgment, everyone has individual thoughts and feelings – this is just my story of what we did and how we felt.
The first scan when reaching twelve weeks of pregnancy is an exciting time. You can’t wait to see the little heartbeat and arms and legs moving and see it there alive on the screen. It is an incredible feeling – one that I got with my firstborn son and shall cherish forever.
When I fell pregnant the second time, we were thrilled but very shocked. We had always planned for more children but we had not expected it to happen so soon as Noah was only six months old. At the beginning of this pregnancy I think I was a little preoccupied. I was so sick; I could not keep anything down. (I ended up admitted to hospital on a drip and had lost a stone and half by eleven weeks pregnant) and was diagnosed with Hyperemesis gravidarum. I also had Noah who had just started crawling and all over the place to look after and so I was never really thinking about the baby to be because I had to deal with the here and now.
On reflection I think I took the second pregnancy for granted, assuming that all would be perfectly well. It did not occur to me that things would be very different second time round.
Whilst I was in hospital I had my first scan, and it was at this point I got the thrilling news that it was a twin pregnancy. A feeling that did not last long enough. Looking back I knew instantly the medics were not happy. I had stupidly said to the Sonographer that she had the most amazing job and wasn’t it lovely to give such good news. She replied with ‘sometimes it is.’ My heart sunk. I knew this was not good. She then went on to inform us that the nuchal fold measurement on one of the babies’ neck was thick and segmented and this could mean a variety of conditions:
1. Patau’s Syndrome
2. Turner’s Syndrome
3. Down’s Syndrome
4. Edward’s Syndrome
The Nuchal fold is a collection of fluid under the skin at the back of a baby’s neck. It can be measured using ultrasound when your baby is between 11 weeks and 13 weeks plus six days old. All babies have some fluid, but many babies with Down’s syndrome have an increased amount.
Our world seemed to crash down around us. We were bombarded with facts, figures and options. We got back to my bed on the ward and both burst into tears. We were devastated at the thought that one of our children could already be really poorly. We hated the thought of suffering.
The health care professionals were, indeed, incredible in their support but they had to be ‘matter of fact.’ We were told that sometimes, a screening test could suggest a high risk of having Down’s syndrome when the baby is in fact normal. This is called a false positive. The false positive rate for a Nuchal scan is five per cent. This means that one in 20 women are wrongly given a high risk. This raised our hopes a little.
They told us that combining a Nuchal fold scan with a blood test would give a more accurate result.
Our optimism increased, I was only 27. I had age on my side; surely the results would come back more positive?
We had to wait the longest week of our lives for the test results. Before we left hospital we were told our risk factor was 1 in 50. This was put in perspective when shown in comparison to the other twin who had a risk factor of 1 in 12,000.
The morning of results day, I sat glued to the phone, waiting for it to ring. I waited and waited and I couldn’t wait any longer, I rang the hospital. The midwife immediately knew who I was and said she was about to ring.
Then devastation. I could not pull myself together when I was told that the risk had increased even further to 1 in 10. This was when the reality of the potential risk really started to dawn on us. We had managed to keep ourselves quite together, optimistic and focused up to this point. Emotions hit with a vengeance. I called my husband and he came straight home from work. We were miserable. We did not know what to do. We had one healthy baby and one baby that could be seriously poorly. We felt so torn.
We went in for another scan with the consultant who discussed all our options. It seemed from this scan that they had ruled out the more serious conditions Pateau’s, Edwards and Turner’s, where life expectancy after birth is a matter of day’s, and were veering towards Down’s Syndrome. It seems strange that you then start feeling thankful for that. Obviously as a parent, you don’t wish for your child to have anything that would make their lives painful, or more difficult, but you do start putting conditions in priority order when faced with it. We were told the only way to know for certain if our baby had Down’s or another chromosomal abnormality was to have a diagnostic test called an amniocentesis.
This is when a needle put through the abdomen to the uterus which extract some of the amniotic fluid and can determine is the Down’s syndrome chromosome is present. However it is estimated that about one in 100 women miscarry as a direct result of amniocentesis (RCOG 2005: 2) and this statistic is even more if you are carrying twins. They informed us they would test both twins. The results could then determine whether we continue with the pregnancy and prepare for the outcome or if the results confirmed a condition, consider termination options. This meant either terminating both twins at 16 weeks or carrying them both till 34 week and terminating the one affected twin at this point. It was highlighted that this baby would then be stillborn.
My husband and I discussed in tearful length whether we could cope with the possibility of a disabled child. We knew things could be incredibly difficult having an older child and two newborn babies alone, without the difficulties of disability added to that. Despite this we still believed that we could cope. We therefore decided not to have the amniocentesis because we had made the decision to keep the baby regardless of the outcome. This decision was also made due to the fact that I was carrying another baby and we felt it was then not necessary to add miscarriage risk to both. This did however make the pregnancy considerably harder as we were unable to prepare for the outcome. There was constant worry at the back of both our minds as to what was to come. To this day it has been the biggest decision of out lives.
Now the decision stage is purely personal choice, made between you and your partner and no judgment can me made in any given situation, as there are too many extenuating circumstances. Our choice was one that worked for us and we are quite a unique case with it being a twin pregnancy as well. Had it been a single pregnancy I could not say hand on heart what our decisions what have been. I think I may have had the amniocentesis so we could have prepared if the outcome had of been Down’s syndrome.
We were so lucky with the family and friend support that we had, all of which made no judgment or gave any opinion to influence our decision and us.
I gave birth to the twins at 36 weeks (after they had to stop their early arrival at 34 weeks) and my first thought was ‘were they breathing?’ The question of Down’s syndrome did not even come into my head. It was not until half an hour later that my husband said ‘You know they are both fine and healthy’ and I said ‘Yes perfect’ and he said ‘No Kerry, neither has Down’s Syndrome. We cried again! With happiness this time. The babies did not even need to go to special care, which is common practice for twins. We felt so blessed.
On reflection, when you think of my odds of 1 in 10, you would think that that 90% chance of no condition was fairly good. It has been found that, most women given a high risk (one in 150 or less) will go on to have a baby without Down’s syndrome. Nevertheless, once your pregnancy has been labeled high-risk it is understandable of the anxieties you will be feeling.
The twins are both now 2 years and 4 month and perfectly fit and well!
The statistics for this piece have been extracted form http://www.babycentre.co.uk/
Keep up with Kerry at Multiple Mummy