Today marks World Down Syndrome Day, which aims to raise awareness of this often misunderstood genetic condition and give those living with Down Syndrome a louder voice. Today’s blog post is written by Andrea Newsham, mum to beautiful Millie Elizabeth who was born with Down Syndrome a year ago. In her touching story, Andrea tells us about the emotional ups and downs of their journey and what it means to have a child with Down Syndrome…
Tuesday the 19th of March was one of the most wonderful, amazing days because my beautiful daughter Millie Elizabeth was born, but it also became one of the saddest days.
My husband and I had been trying for a family for quite a few years and unfortunately had several miscarriages so you can imagine our absolute delight that this time I finally went full term. I had been scanned every two weeks, and it was incredible to see the tiny heart beating on the screen. We were overwhelmed each time but yet still so nervous that we could be successful.
My pregnancy was like any other, the odd feeling of sickness, eating Coco Pops at any time of the day and seeing my belly becoming huge!
It was 3 weeks early precisely to the day that Millie Elizabeth was born by emergency c-section.
It was such a surreal time – I remember my husband Mark had woken up at 4am with a strange watery feeling in his mouth, he didn’t feel well and decided to take the day off work which I now laugh about as I think he was having my early birth symptoms. We weren’t to know later that afternoon at 1:57pm our daughter would arrive.
My waters broke at 8am and because Millie was breached the hospital told us to come straight in.
I was scanned again and the surgeon told us she had moved into such an awkward position he needed to prep for a C-section. It all seemed to happen so fast, my husband was put in all white hospital scrubs while I was now having contractions every 3 minutes. We were so excited, it really was going to happen – we were finally going to be parents. I don’t really remember being long in theatre, I just felt very anxious and scared.
Millie was absolutely beautiful when I first saw her, she was so pink with blonde hair, her skin so lovely yet all wrinkled up. They took her away but everything was fine they told us. I can’t describe the feeling of love we had for her, it was immense. We were taken to another room where I did all the motherly bonding, I was in a little pain but I didn’t care, I was now a mum.
It was only when they took Millie away for the second time that we thought something may be wrong yet the nurses said not to worry as the doctors were just checking everything. After four hours of waiting in a recovery room my mum was allowed to see me and her new grandchild. She was also overwhelmed by her beauty and another girl to add to her family. We waited for ages then finally we were taken to the normal maternity ward but placed in a private room. My sister had then arrived with Mark’s mum and dad. Everyone was just so happy for us; they kept looking at Millie, how cute she was all snuggly in the hospital blankets and a tiny knitted hat.
Not long after, another doctor came and took Millie away, and Mark asked if he could go with them both as he was worried, something just didn’t seem right. When my husband came back he looked anxious; he told me that the doctors thought there was something wrong with her heart but they weren’t sure. I was so scared for my baby. It was now becoming late – about 10pm – and Mark needed to go home to pick our dog Rufus up from the neighbours, but as he was leaving a nurse asked him to stay as another doctor wanted to see us. Huge thoughts of worry and panic scared us as we just waited.
At 10:30pm a junior doctor came in, he didn’t sit down, he just gave us his name and then in the next few moments our world fell apart.
“Have you noticed anything different about your daughter?”… I looked at Millie thinking what must he have noticed and how silly, how could I see her heart? As that’s what they told us earlier…it was her heart? “Have you noticed any characteristics of DS?” What??? “Down Syndrome”…I looked straight at my daughter, she didn’t look DS and what was I looking for? I had no idea…I looked to my lovely husband, who was always so placid, he had gone white as a sheet. He asked to leave the room to compose himself, my heart sank, I’d never seen him like that before.
I was in complete shock, the junior doctor didn’t speak, of course they needed to do more tests but they suspected DS. When my husband returned, the tears in his eyes were the saddest I’ve ever seen. After leaving the RAF last year after 17 years of service he’d been such a calm, serene person and always in control but this had totally shocked him, and I hadn’t realised that tears were now rolling down my face too.
The doctor handed us an A4 piece of paper which had all the characteristics of DS on them, I quickly looked through them and said she hasn’t got any of these, well maybe her eyes had the extra skin layer but I wasn’t a doctor so how did I know. We were then left on our own with our thoughts, the happiest of days had become our saddest. Why us? Why our baby girl? I had been scanned every two weeks; I’d had the test which had been satisfactory. We were confused. From then until early morning we cried a million tears, we had no help, support or guidance from anyone, it became such a painful time. How could we handle a baby with a disability, we surely weren’t the right people? We talked and talked and cried and cried.
I kept holding and looking at her, she didn’t look DS maybe they had gotten it wrong. My family cried and so did Mark’s, they all felt so lost as they couldn’t help or change anything for us, it all seemed so wrong and painful. I had to discharge myself on the Thursday as being on the maternity ward listening to other mums going home with their babies was so difficult, I don’t think I had even slept. I was reading everything I could possibly know about DS – I had to learn and know about the condition.
The hardest part was that the hospital had not treated us so well, they had given us so many negatives, maybe to prepare us for the worst but what hurt the most was no one had said “congratulations”. Just paediatricians explaining what the future might hold for Millie and that we needed to attend the following Monday as Millie did have a hole in heart and even sadder was that her heart was beating too fast. They gave us old leaflets about DS that weren’t a true reflection of how modern and understanding the world is now and that it is all just about development.
I discharged myself and brought our angel home. From that moment on, my husband and I worked it out ourselves. People say it’s made us stronger but we were already a strong couple so why us? We must have cried tears we never knew we had and went to such a dark place not knowing what the future holds for our baby girl.
It’s the hardest job in the world being a parent but even harder having that extra worry, the hospital appointments, physio and paediatricians. I soon realised I just needed to take one day at a time.
I still now have my sad days but I think that comes naturally and I’m sure I’m allowed them. Millie is now nearly a year old and she is doing so very well, she has beaten all the negatives the doctors said might happen and as a determined Mum I want to prove them wrong. Millie was diagnosed with hypotonia (low muscle tone) but with all the physio exercises I do with her she has been sitting up by herself since seven and a half months, something they said wouldn’t happen for ages. As you can imagine I’m so proud of her. We continue to work with her every day and I’m so sure she’ll prove the doctors wrong about the next milestone – walking.
We still don’t know why us and maybe we won’t ever figure that part out but I know that’s okay as we now have beautiful Millie, she’s ours and we love her unconditionally. The ironic part to my story and why I’m writing this for JoJo Maman Bébé is that not only did I bring Millie home on Thursday 21st March which was World DS day, but out of all the lovely gifts I received at my earlier baby shower I decided to dress her in a gorgeous white baby grow with ducks on it – it was by JoJo Maman Bébé and it amazed me to later find out they often use DS models for their fabulous range of clothing.
I guess you can say Millie was meant to be here. I would love people to read my short story and know that I’m honest when I say it was truly hard at the beginning, it is going to be a tougher path to follow and one that is travelled less by others but already the rewards are greater than I ever expected. My path was definitely chosen for us with Millie and I wouldn’t ever change that, she is adorable, gorgeous, cute, and has the biggest smile that simply melts our hearts. I hope I can give my true experience to others and show that although life throws challenges we don’t expect, having a baby born with DS is beautiful and okay. I won’t say it’s easy as we have struggled with her difficulties but she is a life born, she never wanted to have DS so all we can do is give her the best life possible and the most important thing which costs nothing…our complete and conditional love…xx