Submitted by Kerry Mackenzie.
It was July 2014, just 6 weeks after my marriage. There I was, stood in Tesco choosing a pregnancy test. Thinking many things, but mostly about how excited I was if it was true, was I going to have a baby?!
IT WAS TRUE! I was pregnant and the first thing I did was drive to my husband’s workplace to tell him. We wanted this, but hadn’t thought it would happen for us so quickly.
At 4 weeks, I scheduled our 8-week appointment and booked the 12-week scan. Excited to see our baby, I started planning names, needed items, and how to tell family.
The day arrived and I was finally on the bed ready for the scan. We were chatting with the nurse, until she stopped talking, she looked at the screen closer and then stopped the scan. She looked at me and told me she would be straight back.
I felt an overwhelming heaviness as she left the room. Moments later, she returned with another nurse who stared at the screen without speaking. I asked what was happening. The nurse took my hand and said my baby’s nuchal looked enlarged and asked us to come upstairs for a chat. We agreed, sensing it wasn’t good news.
We sat down, and the nurse said an enlarged nuchal could indicate an infection or conditions like Down Syndrome. I thought of my nephew and a child I worked with, both with Down Syndrome. People never seem to believe me, but I wasn’t scared or upset. I just wanted to know my baby was healthy. I agreed to the blood test for various conditions, and then the waiting began. Coupled with the measurement of the nuchal translucency and the results of my blood test, it would show our “risk” of having a child with Down Syndrome. The word risk never sat right with me. How could it be a risk to have a baby with Down Syndrome. It sounds scary and unwanted. It’s something I’m pleased to say is now more commonly referred to as “chance”. Words have meaning and can set the tone for how you view a situation.
That night back at home my mind was racing. But not with what others may have thought. I wasn’t concerned for us, because I knew we both wanted this baby; I knew I could take this on. I didn’t know if the people around us would understand. I didn’t want to have to explain ourselves or have them give us sympathy like we had lost something. We still had our baby; the results would only give us more knowledge and time to ensure we were prepared for him.
The results came in over the phone by a doctor. Our baby had a 1:6 chance of having a child with DS. This made it very likely as anything under 1:150 at my age was classed as high chance. The doctor told me that I needed to have an Amniocentesis. I knew what that was and for me it was too invasive. I said I didn’t need it. She told me that it would tell me for sure so I could decide what to do next. I could feel my face getting hot and my stomach was swirling. I told her that I was having my baby and needed no further tests. She sighed and told me I should think carefully. My face was hotter and there was a lump in my throat. How dare she tell me to think carefully. There was no empathy or understanding coming from this person. Only what felt like judgement and frustration. I said I would speak to my midwife and ended the call.
I had never been a confrontational person, but something changed in me right then. I realised I would have to be strong and loud, not for me, but for my baby.
I saw my midwife the next day and it did not go well.
I was nervous in the waiting room. I knew the midwife would be aware of the results. I hoped she would listen and support me. Once sat in the room she didn’t ask how I was feeling about the results. She proceeded to tell me that I had options to discuss today. I could have a termination and move on. Her words, termination and move on. She said I should think carefully about the repercussions of having a child with a disability. I thought their job was to be impartial. However, it didn’t feel like that. It felt like I would be making the wrong choice by saying yes to my baby. I made it very clear that I would not discuss my choice again and to have it written into my notes for all professionals I may see during my pregnancy.
We had a 16- week anomaly scan. This would check for markers of Down Syndrome, such as a shorter tibia, flat facial profile to name a few. It was extensive and took about 45 minutes. We also found out the sex of our baby as it was obvious! We were having a boy! The scan concluded and the consultant told us that we had no need to worry. He’d never asked how we felt. He couldn’t see any markers for Down Syndrome at all and we should go home feeling relieved. He said blood tests can be wrong. He was confident our child was fine. Yet again the assumption was made that these tests were to decide whether to keep our baby, not to ensure we knew how to support him. We left feeling no different about Riley. We just knew our baby had Down Syndrome. The scan made no difference. Our view didn’t change. We continued to look forward to his arrival.
The rest of my pregnancy was unremarkable. I saw my midwife regularly and she respected my wishes. I had more growth scans towards the end to ensure baby was growing well. He was smaller than average but that was common for children with DS.
I was able to enjoy being pregnant. I did research on what to expect when Riley arrived. My background is education and I leaned on my colleagues for help and knowledge too.
We had chosen a name and couldn’t wait for Riley to arrive.
Riley arrived very quickly. No complications thankfully. As soon as he arrived my husband looked at him and then nodded at me. He had Down Syndrome. We said nothing as we assumed the nurses knew too. It would be in our notes. They were busy doing his first checks. But hours went by, we were moved to the ward, I was trying to establish feeding, all the usual things. Noone was saying anything. I was exhausted and so we let it be. At the end of the first day a doctor came to check on Riley and then asked us to come down to her office for a chat.
Entering the room, it felt odd. There was a student looking down at the floor and the doctor looked concerned. She was shuffling papers and not looking at us. I knew what it was. They didn’t think we knew. So, I just blurted it out. “He has Down Syndrome”! The doctor looked confused and said, “Yes we suspect he does. Did you know”? I couldn’t believe it. I explained our whole story and she was so apologetic. They had been working out a way to tell us, they hadn’t checked our notes. They were worried about our reaction. She said they wanted to ensure they had answers for us and had already contacted he paediatric neurologist to come speak with us. This is what we needed. Kindness, motivation and care.
Riley had to have a blood test to confirm the diagnosis. We had to stay in NICU for 5 days, due to his jaundice and them wanting to ensure his feeding was established. He had an ECG and an ECHO. Lots of information was given to us. Lots of leaflets handed to us. The staff were just brilliant. They made me rest even when I wouldn’t leave his side. They looked after me as much as him. The nurses were so gentle with us. I really believe that if we hadn’t ended up there for 5 days, Riley may not have breastfed. It was harder as he was so lethargic and had no control over his tongue. They would come at every feed to help me position him or just sit with me for support.
We had a mixed bag of professionals along our journey to Riley’s birth. I don’t think any of them were bad people. I believe that they just weren’t knowledgeable. They are taught to be methodical and medical focused. These are vital to good care, but emotional support and terminology is also.
Riley is now 10 and it’s been the best decade of our lives. Having a child like Riley has been the making of me. He has made me that strong loud advocate I wanted to be all those years ago. I don’t fight for Riley’s support and acceptance. I expect it. That’s an important mind-set throughout all I do for him.
