Wednesday, 29 February 2012

How it all began....

Finding out we were pregnant

After much discussion and after changing our minds at least a dozen times we decided, in November 2009, to try for our 8th baby (this would be our first together). We figured, if it happened, it happened. I was a month off turning 39 and my husband was 30 years old.

On February 16 2010, those two pink lines appeared to confirm that we were having a baby. I was 5 weeks pregnant. We were extremely happy to know that, in late October, we would welcome the newest member of our family into the world.

The early part of my pregnancy was stressful. I bled off and on quite a bit and on my husbands' birthday when I was about 8 weeks pregnant, I thought for sure we had lost the baby. We went up to the hospital to have it checked out and cried tears of joy when we saw that tiny little heart beating strongly. My husband still says it was the best birthday gift ever! The bleeding continued for several weeks, but another scan at 12 weeks pregnant again showed that strong little heart chugging along beautifully. This baby wasn't going anywhere!!

Our 19 week scan

At exactly 19 weeks and 2 days, we excitedly headed to the hospital to have our routine morphology ultrasound. We had 95% decided to find out the sex of our baby, but in the end the decision was made for us when the first thing we saw on the scan was a little something extra between the legs! We were having a boy!!

The scan was going so well. There was that little heart again, thumping away. Ten fingers, ten toes. A little round tummy and wriggling limbs. And there was that face... that beautiful little face! He was sucking his thumb and opening and shutting his mouth. He was just perfect!

Felix always had his hands open in the scans
Up until that point, the Sonographer had been very chatty. Explaining as she went, so that we understood exactly what she was looking at. She suddenly went quiet as she looked at his little face over and over again. My stomach sunk. There was something wrong. My baby was going to die. It was all I could do to keep from bursting into tears. It was then I asked, "Is everything OK?"  She made a fairly evasive comment about needing to just check something with the Radiologist, and then left the room.

It was then I cried. I told my husband there was something wrong. They never say they need to check something if everything is fine. I told him that if the Radiologist came back in with her, then we'd know there was something wrong. The Radiologist came back in with her! My husband asked what was wrong. The Radiologist was not forthcoming, but said she just wanted to check a few things again. And there was his face...that gorgeous little face again!

Felix had no nasal bone
We waited for what seemed like ages while things were checked, and then the Radiologist turned to us. She said she was concerned about a couple of things. Our baby did not have a nasal bone (hence all the checking of his face). That meant nothing to us. All I could think was that our baby was going to die. "I think your baby has Down Syndrome", she said. I cannot explain the feeling of relief that washed over me. Here I was thinking our baby would not live, and all he had was Down Syndrome!! We could handle that! My husband shocked the Radiologist by saying, "Is that all?"  She told us she didn't think we understood what she was saying, but we assured her we did. We were in love with our baby from the first time we saw those two pink lines. Him having Down Syndrome did not change that one little bit.

You should terminate this pregnancy

We were stuck sitting in a room being 'counselled' by a Doctor from the hospital for a couple of hours. His recommendation was to have an Amniocentisis with a view to termination if the results came back positive. He reinforced every negative stereotype about people with Down Syndrome that I had ever heard of. It was all negative information, and the pressure to terminate was intense.

We repeated to him several times that if our baby had Down Syndrome, we were OK with that. We did not want an amnio (which carries a small risk of miscarriage). We were happy to continue with the pregnancy and love our baby regardless of the outcome. He did not want to listen, so we asked if we could leave. After making a booking for a follow up ultrasound at 25 weeks pregnant, we left.

We had discussed Down Syndrome before I even got pregnant. I was 39 years old and at an increased 'risk' due to my age. Neither of us had an issue with that possibility. Looking back, I remember reading a lot about Down Syndrome during those first few months of pregnancy. Maybe it was Mothers' instinct??

Once we got home (a 4 hour drive away), we read all we could find about Down Syndrome and ordered some books for us and the kids. We also contacted the Down Syndrome Society who were a wonderful help with information. Our family was incredibly supportive and we all looked forward to meeting our little guy... even more so than before!

Our world came crashing down

What happened next crushed us.

We returned for our 25 week scan excited to see our little man once again. We enjoyed watching him wriggling about on the screen. He was an incredibly active baby and barely ever stopped moving.

After the scan we went to see our Obstetrician for a check up. He looked through the report from the scan, looked at us and said, "I suppose you were told this is not going to end happily?"    I was a little confused. I told him we were aware that he probably had Down Syndrome, but we were happy with that and not sad at all. He replied, "No, your baby has hydrocephalus (fluid on the brain). He may not survive the pregnancy, and if he does, possibly not for long after that." I felt a rush of emotion and was totally devastated. Our baby may not  live after all. This active, wriggling baby moving inside of me was very ill. I found it hard to believe.

We told him that no matter what happened, all we wanted was to hold our baby in our arms. He assured us that he would do everything he could for our baby to be born alive. We were to have scans every 2 weeks to measure the ventricles in his brain and the size of his head (which was already bigger than normal due to the fluid). We left the hospital with heavy hearts and shut ourselves away from the world for a couple of weeks to grieve for our beautiful baby.

Over the coming weeks, the fluid levels in his brain stayed the same. Still dangerously high, but no worse. We allowed ourselves a little glimmer of hope with each passing day, and in the last couple of months started to get a bit excited. Maybe everything would be OK.

Our little miracle

On September 29 (36 weeks pregnant), I rolled over in bed and my waters broke. I woke up my husband who nervously drove me to the local hospital. We were then air-lifted by the Royal Flying Doctor Service to the city to have our baby. My pregnancy was considered high risk and the Paediatric Neurosurgeon, Obstetrician and others who were reviewing my pregnancy were all on call there in case of any problems.

My labor only lasted 4 hours, and all things considered, was quite easy. The time came to push (at which time my husband got the giggles...nerves I think). He and I both reached down and grabbed our baby under each arm and lifted him onto my belly. Our precious little guy! I took one look at his little face and said, "Yep...he's got Downs, and he's perfect!"  Our little man was alive. He was alive and he was healthy and to look into his eyes was one of the most overwhelming moments of my life!

We named him Felix Sawyer. He was 3110 grams (7lb 1oz), not bad for 4 weeks early. He was 47cm long and his head measured 33.5cm.

Apart from having hypotonia (poor muscle tone) which is common in people with Down Syndrome, he was completely healthy. He needed to be tube fed for a couple of days until he was strong enough to feed, partly because he was early, but fed like a champion after that. A brain scan the next day came back NAD (Nil Abnormality Detected). Even the Paediatrician in Neonatal said he was a miracle. He told us that the name Felix means 'Lucky'.

After 4 days we were able to bring Felix home to begin our lives together. He is the source of so much happiness to us and to others. We are thankful every day to have him as part of our family.

Our perfect little man


"Mum... I think I made a mess!"

I am blessed to be married to the most incredible man and am Mum to 8 amazing children (22,20,19,17,15,13,12 & 1). I'm also about to become a Granny for the first time!

Our youngest son, Felix (17 months), is the inspiration for this blog. Felix was born with Down Syndrome. He brings us unbelievable joy each and every day and we feel priviledged to be a part of his life.

My hope is that by sharing our journey, others who have just received a pre-natal diagnosis of Down Syndrome or have just given birth to a precious little one with Down Syndrome, will be encouraged by hearing about Felix and will see that raising a child with DS is an incredible blessing. The Down Syndrome family is a huge and loving one, and you will never be alone. It really is a beautiful life!