‘The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear, is fear of the unknown’ – H.P. Lovecraft
‘Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable’ – Sydney J. Harris
Since announcing my pregnancy, I’ve had a few moms of children with special needs ask me similar questions. Was I scared to fall pregnant again? What testing did I do this time around? So I decided to share my journey so far – both exhilarating and terrifying all at the same time!
The desire to have another child was always there. My older two boys are still amazing with Nicholas and they were all for another sibling, which really touched me. And Nicholas in turn has so much love to give and I know another child in the family will learn a great deal from him. But the fear was also there. Nicholas’s birth and subsequent diagnosis really opened my eyes. You always know someone who knows someone, whom that happened to – but it happened to ‘other people’. After Nicholas, I became that other person. I was the person they were talking about when they mentioned ‘a friend of a friend has a child with Down syndrome.’ I envied those couples that announced to the world the minute the pregnancy test came back positive. I could never ever be that confident. I had gone through too much and I now knew too much about the other side of the coin; when things don’t go according to plan. My anxiety extended beyond the normal worries of having enough time for another baby, the financial consequences or how it would change the family dynamics.
Although non-disjunction Down syndrome, what Nicholas has, is the most common type and completely random (i.e. not hereditary), my chances of having a subsequent child with the same diagnosis did increase, given my history and my age (36). It was a lot to think about. Of course I would not change Nicholas for the world and we couldn’t love him more if we tried, but what happened if we were destined to have another child with special needs? My thoughts didn’t just run to Down syndrome. I started thinking maybe our next child would have cerebral palsy or autism. It was one of the most agonising decisions that my husband and I have ever made, but in the end we decided that fear could not dictate our future. We would never regret having another child, regardless of its abilities or disabilities. That child would be loved for being exactly the person he or she was meant to be. On the other hand, if we decided not to have another child, I knew it would be a regret I’d have to live with for the rest of my life. The decision was then made.
Once we had decided that another baby was (hopefully) in our future, we had to discuss how we would go about things, knowing now what we know. With Nicholas being a birth diagnosis, the next time round we wanted to be informed of everything. We just could not handle another shock at birth. It was decided that we would see a foetal specialist at 12 and 20 weeks and follow the NIPT route (non-invasive prenatal testing). A simple blood test is done around 11 weeks and then sent off to the States. The wait is about 3 weeks and your results will then come back as either low risk or high risk for chromosomal abnormalities. Should you come back high risk, the only way then to really detect Down syndrome, is by having an amnio.
Thankfully I fell pregnant quickly and our journey began. I’m not going to lie – although I tried to be as positive as possible, I was a nervous wreck during the first trimester. I really wanted to enjoy the special time, as I was 99% sure it was going to be my last pregnancy. But I also had nagging doubts that would crop up in my mind, particularly at 01h00 in the morning when I made yet another trip to the bathroom! I was so relieved to see the heartbeat at 7 weeks but every bit of joy I felt was also marred by the fact that with Nicholas, we were oblivious to what lay in store and was this in fact history repeating itself?
So it really was a bag of mixed emotions during my 1st trimester – fear, anxiety, excitement and also guilt. Guilt, because I was hoping that this baby would not be born with an extra chromosome. But what does that mean about my feelings for Nicholas? From day one, I have always said that the Down syndrome must not define him. I don’t believe for a second that his infectious laugh, crazy yet rhythmic dance moves and loving nature can be attributed to his extra chromosome. We love Nicholas exactly the way he is. But at the same time, do I want my 4th child to be born without special needs? Absolutely! I would hope that this child will be spared any additional hospital stays, open-heart surgery, countless hours of weekly therapy and the limitations and prejudices from society. I have decided not to feel guilty any longer as it is such a pointless emotion. And in no way does it diminish my unconditional love for Nicholas.
A few weeks after I discovered I was pregnant, a question was put forward by a mom on one of the Facebook groups I belong to. It is primarily an American based group, for parents of babies and toddlers with Down syndrome. One of the moms was thinking about having another child and asked the group whether she and her husband needed to be genetically tested before falling pregnant, given her history and what genetic testing could she do once pregnant. I was quite shocked at the responses she received. This is a closed group and feedback is usually friendly, positive and encouraging. But not so much this time around.
Many people asked her why she wanted to do genetic testing. Was she not happy with the child with Down syndrome that she had been given? What was so wrong with having another one? And my personal favourite: ‘these children are such blessings!’ She replied that the issue at hand wasn’t whether she did or didn’t want another child with Down syndrome. It was about knowledge. With her 1st child, the diagnosis only occurred at birth (like me) and so with any subsequent pregnancies, she needed to know everything and be prepared. If there was another diagnosis of Down syndrome, then she needed to ensure that she gave birth at a hospital equipped with an excellent NICU unit and a cardiologist, amongst other specialists, on hand.
I completely understood her reasoning as that’s exactly how I felt. I did the Panorama blood test at 11 weeks, which was then sent to the States and the waiting began. The first thing the foetal specialist asked me at my 12 week appointment, was why the Panorama test? (it is a very expensive test, approximately R8 000, and not covered by medical aid). And I told her why. It had nothing to do with termination, but everything to do with knowing. I needed to know if there were any serious medical issues awaiting us and this time I needed to be fully prepared.
The 12 week scan was nerve-wracking but also amazing. I couldn’t believe the level of detail – it finally hit me that that was my baby. I actually had a little life growing inside of me! The appointment couldn’t have gone better and I felt a great sense of relief. I knew that if I could just get my blood test results back, my worries to some extent, would be put to rest.
At 14 weeks, I got the call that my results had come back as low risk. We had been through so much as a family the past few years and I am so thankful for my 3 beautiful boys and a healthy baby on the way. I have since had my 16 week check-up and felt the first little kicks. It doesn’t matter how many times you have experienced that in the past – the feeling is absolutely magical.
My 20 week anomaly scan is coming up next week and I know it’s an important appointment. I will no doubt be walking into the examination room with knees of jelly! But I also know that no matter what, we’ll get through whatever lies ahead. If Nicholas has taught me anything, it’s that you have to live day by day and so many things in life are not in our control. All I can do is take care of myself and the baby and stay positive. This little baby is already so loved and the level of excitement felt in the family, just neutralises my fears. For now, everything is as it should be and that’s all I can really ask for.