My husband and I decided that the time was right to try for a baby. After all, my daughter was nearly 4 and she needed a brother or a sister. I decided that I wanted a honeymoon baby as we were getting married on the 6 November 2004 I came off the pill at the end of September to give my body the chance to get into a regular pattern again before we started trying during the honeymoon. Well, you guessed it, I fell pregnant straight away and I was 5 weeks pregnant at my wedding! Luckily I knew that I was pregnant previous to my wedding or I am sure my baby would have had fetal alcohol syndrome as well.
We had a wonderful wedding, I was glowing, I was the happiest person in the world. I was pregnant! I married my soul mate and I had my wonderful daughter there who was absolutely perfect. I also had a “pregnancy glow” that day, I felt like a princess.
We went on our honeymoon where by then, my type of morning sickness had kicked in. My morning sickness is a headache and sleep at 4pm! Also extremely tired all the time. So my honeymoon was spent lounging around and enjoying time with my new husband! It was his type of holiday so that was lucky!
Anyway, got back home and unfortunately had to go on with normal life until my first ultrasound scheduled on the 27th December at 13 weeks pregnant. They offered me a nuchal translucency scan where they measure the fold of skin on the baby’s neck and along with that and blood test results, they can give me a 1 in whatever chance of having a downs syndrome baby. These tests are routinely offered to women over 35. I was not sure why they offered it to me, but thought it is better to be safe than sorry. I have since found out that in Newcastle, Australia they are offering it to all women now as a precaution.
I thought that everything would be normal. I am 22, healthy (enough), have a healthy husband and a perfectly healthy 4 year old girl. I was wrong.
I told my daughter that mummy was having a baby and we were going to see baby with a special machine (ultrasound) later on the day. The man would show us mummy’s baby!
When we got to the ultrasound, we waited for about 10 minutes and got called in. I explained that before my daughter I had already lost a baby (unsure of the reason) and only found out at my 1st ultrasound when there was no heartbeat. I wanted the radiologist to check for a heartbeat before showing me my baby.
Straight away there was a heartbeat! He pointed it out and I cried. Little did I know, I had a lot more crying to do. I had the ultrasound videotaped also.
The radiologist was very quite and my son was not moving much at all, but I found out that was ok. He must have been sleeping! I was really worried because they wouldn’t point anything out. He finally said that he couldn’t see all he needed and that I needed to have a vaginal ultrasound. So my husband took my daughter out while they done that. I was really persistent on them pushing the video back into tape the ultrasound which they finally did with a sigh.
The radiologist left the room and sent my husband back I with my daughter. I knew in my heart there was something wrong.
He came back in about 5 minutes later and I will never forget his words… “This is not good news, there is something wrong with your baby” He went on to explain the findings and gave me a 1:14 chance of having a trisomy 21 baby. I didn’t even think to ask what trisomy 21 is. I had never heard of trisomy! I had heard of downs syndrome, just not the medical term, Trisomy! He also went on to explain that my baby my have trisomy 18 or a very slight chance of trisomy 13. He was pretty sure it was 21 though. He also said that my baby had a cystic hygroma covering from his head down to the bottom of his chest. This is a fluid filled cyst, like a blister I suppose. How painful! My baby also had exompholece. This in itself is fatal. It is not like an omphalocele which can be operated on.
As this was the week between Christmas and New Year, the radiologist was unsure if I could go to the fetal medicine unit at my local hospital. He told me he would fax through his findings and to give the hospital a call the following day to see what I could organise.
I went home wondering what trisomy 21 was. I cried the whole hours car trip all the way home. I didn’t sob, just had tears rolling down my face. I logged onto the net and typed in trisomy 21… “Downs Syndrome” was all I read. I cried and cried. Rang my mum and cried some more. My sister in law who was 24 weeks pregnant called to see how it went and when my husband told her she cried too.
I tried for hours to get through to the FMU which wouldn’t answer the phone. I was frantic and finally went to see a doctor (my GP was on holidays). He had no idea what advice to offer me, but he called and spoke to the hospital professor which knew of my case. He told me to go straight down to the hospital which was an hours drive away. They told me to go to the anti-natal clinic as there would be no one else there at that time of day.
I seen the head of fetal medicine as soon as I got there. He shed light on what could be wrong with my baby. He said because of the cyst, that what could have made the nuchal translucency abnormal. He offered me options which included a CVS. I decided that it would be in our family’s best interest to have the CVS. By then my mum had arrived and taken my 4 year old home to my house. I can’t even begin to describe how a CVS felt. But it was worth it.
I was told to go home, enjoy New Years Eve and he would call me the following Tuesday to let me know of any results that may have come through with the rapid testing. Well I didn’t enjoy new years at all.
My daughter went to her biological dads during this time which I guess was a bit of a relief. The following Tuesday I called and they told me to come straight in, I knew then that I would have to make a heartbreaking decision.
I walked in to find the anti natal clinic full of pregnant women, when I told them who I was, they took me straight away and put me in a room on my own with my husband.
The doctor came in soon after and told me my baby’s diagnosis… Trisomy 13! I didn’t even cry. I just took it like a slap in the face. I asked what sex my baby was and he told me that it was a boy. Mason is what we have named him so that is what I will refer to him as from now on.
The Dr told me the options, he told me what could happen and he told me that the choice was mine. He told me the facts but thank god, he never once said to me that my only option was to terminate. He told me that a lot of babies do die, but it was my choice along with my husband. As we had a few days previous to talk about the “what if’s” we had come to the decision that if anything was wrong with our baby, then we would terminate. We were both young and know that I can carry a healthy baby. I also didn’t want to burden my family if anything had of happened to my husband or myself. I told the doctor of my decision and he booked me in the following day for my termination.
I went home and cried, rang family and once again my mum and my sister came up (they live 4 hours away) to be there for me and my husband. They didn’t arrive till 2am, I was still awake, I had to be at the hospital by 730am.
We arrived at the hospital and I had so many people come and see me. I can’t even remember what they were all for. I went to theatre at 1pm. I didn’t cry before I left. I didn’t say goodbye to my son, but I think mentally I did. My husband put his hand on my tummy to say goodbye. I woke up and bawled my eyes out. I felt empty. I wanted my baby back just so I could say good bye and how sorry I was that I hurt him so much. I still want that to this day.
I will never regret my decision to terminate Mason, but he will always live on in my heart. He is my son and it hurts me now when I see little baby boys. I always wonder what my son looked like!
The doctors never noted any other abnormality with Mason, i.e. cleft palate, extra digits etc, but maybe I wasn’t far enough along.
I was 15 week 3 days pregnant when I had to say good bye.
My husband and I have had genetic testing done also because the chromosome makeup of Mason was a little different to a normal trisomy 13. He had a Robertsonian translocation which can be indicative of a genetic background. Thank god, my husband and I have the all clear and they say it is a less that 1% chance of it happening again. I will never tell my daughter again because the hardest thing was telling her that mummy’s baby had died. She made me cry when she asked “Does that mean I’m not going to have a brother or a sister anymore” I think that broke my husband too.
I would never have known what trisomy 13 was let alone what any other trisomy is if it wasn’t for Mason. I think that all baby’s are special and all the babies that I have seen with trisomy 13, 18 and 21 are all special and unique.
I praise every single mother and father that has a trisomy 13 baby, I am definitely not as strong as them.
I often wonder why me? But then I think why not me? My baby will come back to me one day, but obviously his time wasn’t right just yet.
Mason, I love you my baby boy. I am sorry for the pain mummy caused you and I am sorry I never said goodbye. I guess there was never going to be a goodbye; it is just until I see you again. I miss you baby and my heart aches for you every second of every day. The day I lost you is the day a piece of my heart was taken too. Felicity often asks of you. You are a special boy and know that mummy and daddy will be here for the next time you want to join us XOXOX
Mason 27/09/2004 ~ 5/01/2005
