Have you noticed anything different about your baby?

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

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22 comments for “Have you noticed anything different about your baby?

  1. 21/03/2014 at 3:33 pm

    Andrea, you must be so proud of Millie. She is a totally wonderful little bundle of joy. I’m sure your blog will make others as emotional as I am after reading it.
    Thank you so much for sharing this with us.
    Laura T, JoJo Founder & MD

  2. Kathryn
    21/03/2014 at 3:57 pm

    This is so beautifully written. So honest and inspiring. Wishing you, Mark and Millie a lovely future. She’s gorgeous.

  3. Laura Maynes
    21/03/2014 at 4:07 pm

    Andrea and Mark,

    You truly are an inspiration and the way in which you have written your story will no doubt help parents that find themselves in a similar situation. Millie is absolutely beautiful and a credit to you both. It just goes to show that with lots of love, care and attention you can prove the Doctors wrong and aid development.

    Thank you for sharing and hopefully pathing the way to a shift in perception and understanding of DS.

    ‘Congratulations’ on having a perfect little angel that brings so many people so much joy.

    Love

    Laura xxx

  4. Sinead
    21/03/2014 at 4:12 pm

    Hi,
    You told a story very very similar to our own. We have a beautiful daughter Rose who is 6 years old and amazing. She’s in mainstream school and has lots of friends. Lovely to read another story and such a positive one! By the way, we also supply your Shnuggle Moses Basket which was inspired by Rose.
    Sinead & Rose x

  5. Sarah
    21/03/2014 at 4:16 pm

    Thank you for sharing your story, you are inspiring and Millie is a treasure.

  6. Gillian Chase
    21/03/2014 at 5:40 pm

    I understand all you went through Andrea as I went through all the same feelings and emotions as I have a 19 month old beautiful son with Down syndrome,and though he’s not walking yet he’s well, very happy and makes everyone else smile x

  7. 21/03/2014 at 7:32 pm

    For all the times that someone should have said it…….. Congratulations xxx

  8. Alice
    21/03/2014 at 7:37 pm

    What a beautiful daughter you have. A very inspiring story. Millie sounds like a lucky girl to have such wonderful parents. I hope life brings you lots of happiness and joy with your little girl and perhaps more little bundles in the future. I also hope that sharing your story may make other people’s experiences like these easier. I admire you for being so brave and putting pen to paper.

  9. The Thorntons
    21/03/2014 at 7:56 pm

    Sharon, David, Harry and Jessica

    Andrea, Mark and our gorgeous Millie, What a roller coaster of a ride this year has been for you all. You have been faced with so much uncertainty and so many challenges, all of which you have dealt with and worked through in the most amazing way possible and we are so very proud of you.. You are the most patient, kind and loving parents and this is why Millie is such a gorgeous little personality, so bright and happy, with the most amazing mega watt smile. It is an absolute pleasure and a privilege to be part of Millie’s life and i know she will continue to prove those Doctors wrong because not only is she a clever little miss but she definitely has her Mummy and Daddy’s will and determination to succeed, she is a little trouper and we are all so very proud of her… She is loved beyond measure. xxxx
    her

  10. Laura
    21/03/2014 at 8:05 pm

    Congratulations on your beautiful daughter and thank you for writing a positive piece. My daughter Eva has DS and is just 3. She has taught me so much about myself and amazes me with her determination, cheekiness and bravery. I hope the future brings you all health and happiness.xx

  11. suezy
    22/03/2014 at 12:55 am

    Andrea and Mark, you have both been so brave telling your story, Your little girl Millie is so beautiful and a credit to you both. It must be so hard going through every day wondering about her and if she is ok, but remember you have made a difference to her life and happiness as she knows how much you love her! keep strong and enjoy your time and experiences you are helping her so much and it is showing in her progress.

    You are both amazing people as is your beautiful little girl

  12. Katie Currie
    22/03/2014 at 7:59 am

    Andrea, this was wonderful to read. You must be so proud to have helped Millie reach milestones that you’d been told would be delayed. I would love to read a regular blog by you! Katie Xx

  13. Heather Barnes
    22/03/2014 at 9:15 am

    What an emotional and inspirational story! Millie is gorgeous and I’m sure you can’t imagine life without her! There is a saying that ‘God only gives us what we can cope with’ and I think that sums it up really!

  14. Laura
    22/03/2014 at 4:36 pm

    She is truely beautiful, you must be very proud. Your story reminds me very much of my own, my beautiful daughter Ada is just a month older than Millie and also had DS. She is such a delight and doing amazingly well. I too have my down days, and there is still a part of me that feels angry on the ‘why us’ days. However, life is good and I have a wonderful happy little girl who’s path will be just that little bit different.

  15. Andrea Newsham
    26/03/2014 at 8:44 am

    Thank you so much to everyone who has taken the time to read, like and leave lovely comments about my story.
    We are totally overwhelmed by the huge response and we are truly grateful to Jo Jo Maman Bebe and especially
    Laura Tenison who has let me share my personal story with you all.
    I can’t say what the future holds for Millie but I am determined to stay positive and continue my dedication.
    Millie is just wonderful and I hope I have shown hope and inspiration to others that anything can happen but anything is possible.
    Thank you
    Andrea Newsham xx

  16. 04/04/2014 at 3:39 pm

    Thanks again Andrea,

    One more word of encouragement to the parents of DS babies:

    Our DS employees here at JoJo are some of the most dedicated and loyal of all our teams. We have currently have 6 boys and girls with DS amongst our teams and they are great company – raising the spririts of all those they work alongside. We are always trying to encourage other companies to consider taking on members of staff with DS or at least offering work placements. It benefits all concerned.

    X Laura

  17. michelle townhill
    04/04/2014 at 6:19 pm

    andrea and mark, thank you so much for giving me the pleasure of looking after millie when you go to work, she is the most adorable little girl in the world, she lights up everyones life, and she brings so much joy to everyone whose heart she touches, she is a credit to you both, thank you michelle xxxxx

  18. Nicola
    12/04/2014 at 8:02 pm

    Andrea and Mark and Millie……
    After meeting you all in person, it makes your story even harder to imagine this could happen to you all. You are one of the nicest, caring, loving and wonderful parents hat Steve and I have met in a long time, it really does come natural to you being parents and we could see that a mile away. Millie on the other hand is beautiful, full of happiness and a bundle of joy……. ( we miss her already)
    No doubt you will both have days where things seem hard, but hey were only a phone call away. Millie really is a wonderful little girl who will be running rings around you both very soon………haha.
    Millie really is a credit to you both!!!!
    All our love Nicola, Steve, Izabella and Sophia xx

  19. Ann Dean
    05/06/2014 at 10:00 pm

    Dearest Andrea, Mark & Millie, this is Harry Dean’s granny here (friend of The Boltons). Your story is very compelling and Millie is a most beautiful little girl. I can’t wait to see her, so do bring her to visit us when you are next in Preston. Millie is so lucky having you as parents as her life will be very cherished. Love to you all. Ann & John xx

  20. Dave Stevenson
    20/06/2014 at 10:18 am

    Andrea, Mark and Millie, Firstly let me say how much your story moved me, thank you for sharing it with us all.

    I have had the greatest pleasure of working with Mark for the last year and what I saw was an overwhelming love for his beautiful daughter Millie and how proud he was of his lovely family.

    I look forward to meeting Andrea and Millie in the very near future. Once again thank you Andrea. I am certain Millie will thrive and flourish with such loving parents

  21. 17/09/2014 at 8:18 pm

    Hi Andrea
    I met you on a flight to Cyprus a couple if week ago.
    You truly inspired he with your story!
    My contact details are on my website. Be lovely to hear from you.
    I love your story x

  22. Joanne Lunt
    15/10/2014 at 5:30 pm

    Your story is really inspiring Andrea and I’m sure it will bring comfort and hope to a lot of parents who are going through a difficult time of uncertainty. Millie is adorable! It’s obvious how much joy she’s brought to you and your husband, and the love you have for her is obvious for everyone to see. Lots of love xxx

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