Darcy bear

In April 2016 my husband and I found out we were going to have our second baby and we were over the moon. I had a lovely pregnancy with Aubree who was born in March 2015 and I just expected the same with this pregnancy so when we attended my 12 week scan, our world fell apart. During the scan the sonographer asked a nurse if the room next door was free so we instantly knew something was wrong. After waiting for what seemed like a lifetime but was only 5/10 minutes, a doctor came in and told us the baby had a lot of fluid at the back of it’s neck so they suspected it had Down’s syndrome but I’d need to have an amniocentesis done to know for sure. This couldn’t be done til I was 15 weeks but we turned it down because there was a risk of miscarriage and if the baby had downs, we still would have gone ahead with the birth so no need for it. Even though we would love our baby no matter what, it’s still hugely upsetting to know there is something wrong, so we left the scan with heavy hearts and tried to get our heads around this new situation.

We then had a 16 week scan where the doctor said he couldn’t get a clear picture but he thinks it looked like the fluid had reduced slightly which was a good sign. This led us into our 20 week scan with high hopes which were immediately crushed. The fluid had increased but they also found a bilateral cleft lip and possible palate (they can’t tell for sure on a scan), talipes in both feet, a hole in the heart, stunted growth and possible spina bifida due to a piece of bone protruding at the bottom of the spine. Hearing all this in one go felt like someone had just dropped a ton of bricks on us so we were then referred to specialists in Cardiff hospital. We eventually agreed to have the amniocentesis done at 24 weeks because this was the only way they could see what was wrong with our baby. The results came back with Wolf-Hirschhorn Syndrome.

We were told our baby was a girl and were given a load of information printed off the internet because doctors didn’t seem to know what this syndrome was but this information was no help to us at all. After being told it was a life limiting syndrome and it’s possible our baby could die in the womb or in the first few weeks after birth, we turned to pages like this and Facebook to hear stories off others and we clung to the hope that our baby girl would make it.
Weeks went by and I was in hospital every other week for scans which then turned to every week as the consultant expected our girl to stop growing, leading to early delivery. Although my amniotic fluid was decreasing at every appointment, she continued to grow and shock the consultant each week by staying in her safe place. We were becoming more and more terrified as we came closer to the birth because to us, she was happy and safe inside my tummy, getting everything she needed. Once she was born all that could change and for all we knew, we could lose our little girl.
Even though our baby was surprising doctors with her continued growth, we were told to prepare for the worst which we tried to do but when the day came, our little Darcy bear gave them the biggest shock of all. She was born at 4lbs 6oz with an incomplete cleft lip (only a small part of her lip was affected) when we were told she had nothing under her nose at all and she was so much healthier than anticipated. I even got to see her for a bit before they whisked her off to the nicu.
The next couple of weeks were a blur whilst Darcy went from strength to strength. She was only on oxygen for 2 hours when born, she didn’t have talipes and the protruding bone turned out to be nothing but a dimple so no spina bifida. Whilst in hospital we learnt how to feed her via the ng tube and after 16 days we were able to take her home to meet her big sister.
After 1 month we started orally feeding her a small amount before each ng feed and she has slowly increased her milk intake since then. She has gained good head control and can roll on to her side but so far she’s unable to pick up toys or roll over completely. She responds really well to any sort of lights and loves seeing the different colours move around her as they help calm and soothe her.
Darcy is now 1 year old, weighing 11lbs 6oz and has had both her cleft lip and palate repaired. She is the happiest baby who is constantly smiling and continues to prove doctors wrong. She has a long way to go in regards to surgeries and physiotherapy to help her development but she’s here, she’s thriving and we love her more than words can say!