Willow’s Story

Willow’s Story

Willow’s Story, by her mum, Nicola

My partner, Mark, and I had so much to look forward to, as we were expecting our first baby together. I was so happy that I had finally found my Mr Right! As we headed for our first scan, we were so excited to see our special one on the screen. The lady doing the scan said something about the fluid at the back of baby’s neck. She reassured us that this alone was nothing to worry about, and I was to have a blood test to see if that pointed to anything. It was not the way we expected the scan to go, but we put it to the back of our minds and just got on with our day. 3 days after the blood test, I got a phone call informing me that the results were back, with a high chance of DS. An appointment was made for us to see the consultant, where they said I would need further tests. They said that though the test (CVS or amniocentesis) would carry risk of miscarriage, there was a blood test (NIPT/Harmony) with no risk of miscarriage.

However, it wasn’t free in our area and it would cost a few hundred pounds. We were sent away to think and let everything sink in, and we decided to pay for the private blood test. We had to go all the way to Leeds for this. And we were told the results would take a week. It was such a painful wait, and I was phoning them daily to see if they had my results yet (even though they had reassured me that as soon as it was there, they would ring me). It was just so hard to think of anything else. How did we get from being so happy and excited, to this? Each day was so difficult waiting for the phone to ring. I was dropping my daughter off at school, signing her in at the school office as she was a bit late, when my phone rang and I saw a number from Leeds come up on my screen. This was it! This was the call we had been waiting for.

I answered my phone and I tried to stay calm, as I was kissing my daughter goodbye. They explained who they were and said the results are back. They told me, “Unfortunately, your baby has Down’s syndrome.” The words stung, as I watched my daughter walk away, looking back and waving. I just froze and thought, don’t break down, not here, not in the school office! The lady on the phone asked if I was ok, then I couldn’t hold it back any more. I asked her do you know the sex of the baby? She said, “Yes, do you still want to know?” I told her of course I did! And she told me, “It’s a girl!” Walking back to my partner, who was waiting for me in the car, all I could think was, how am I going to tell him? Is he going to leave me? What will he want to do? As I got in the car, I was ending the call. My partner was looking at me and had guessed who was on the phone and what they had said by looking at me. He just held me and told me that everything is going to be ok. I said, “What about you? What do you choose?”, hoping that he was going to give the the answer I wanted to hear. He said, “There’s still a heartbeat. There’s still life!” I cried again, and he wiped my tears.

We had a hospital appointment that day, but it was all a bit of a blur. All we knew were we were having our baby, no matter what! And, yes, our baby had Down syndrome! I worried all though the pregnancy! At 22 weeks it was picked up on a scan, because I’d previously had treatment on my cervix, that it was much shorter and thinner. I’d need to have my cervix stitched to stop her being born too early. This felt like another blow! Everything was just going so wrong! But the surgery was a success. I made it to 36 weeks, when the stitches were removed, so I could give birth. It was then that it became scary! I’m ashamed to say I kept saying to my partner, “What is our baby going to look like? Am I going to be scared of her?” So stupid and irrational, I know!! But it was my very real fear.

I carried our daughter right up until I was induced at 39+6. And our daughter, Willow, was born weighing 7lb 4oz.She was in respiratory distress when born, and we both got sepsis. Willow was rushed to special care, and I was taken to maternity where we were both given IV antibiotics. When we finally got to see Willow she was in a incubator with a feeding tube. I don’t know why I’d been worried, because when I saw her, those fears disappeared. She was just so perfect! The rush of love I felt was amazing and I wanted to hold her so badly! I couldn’t stop looking at her, she was just beautiful! I wasn’t scared anymore, only worried for willows health. She spent a long 4 weeks in hospital. Her daddy travelled miles ever day to see us both, after he finished work. He must have been so tired, bless him! But eventually we got to go home! And it was wonderful! Willow is now 14 months. Due to an unsafe swallow, she was always fed by NG tube. And when she was a year old, they decided she would do better with a peg (a feeding tube direct to her stomach). The hope is that she may, in time, learn to feed and swallow safely, but we will just wait and see. Willow is the happiest little girl I know and she loves life! Not a day goes by where she doesn’t have the biggest smile on her face! It’s a pleasure being her mummy and daddy, and we are so very proud of our baby girl!