Written by Louise, Joshua’s Mum
‘The difference between Ordinary and Extraordinary is that little Extra…’ chromosome.
I have always liked this quote and since the birth of my gorgeous baby boy Joshua in February 2022, with the slight tweak, it’s now perfectly fitting!
Trying for a baby at the age of 41, I was aware of the increased chance of complications, but I wasn’t aware of how truly incredible those ‘complications’ could and would be.
A few days after my 12-week scan and blood screening tests, I got a call from a midwife at the Antenatal and Newborn Screening unit. Instantly I knew it wasn’t going to be good news, my heart sank. She told me that the chance of us having a baby with Down syndrome was 1:5, a 20% chance. We discussed the options, and I desperately tried to take it all in and make sense of the news. My husband Jon and I decided to go ahead with the Non-Invasive Prenatal Test (NIPT) so that we could try to be prepared in any way we were able to, but at no risk to our baby.
Around a week later, we got the news that it was ‘Highly Likely’ our baby had Down syndrome. I felt instantly sad and worried about what the future would hold for our baby and for all of us. What would their life be like? Would they lead a ‘normal’ life? Would they have learning difficulties and health issues? Would they be able to have a family of their own? How would it impact our daughter Georgia? Thankfully, Jon held me and straight away said, “It’s still our baby no matter what and it doesn’t change anything.” I was relieved he felt the same way I did and happy to know we were on the same page.
The next few weeks I did a lot of research into Down syndrome and some of the information scared and worried me, but I also came across a lot of uplifting, positive real experiences, and I felt hopeful for what our baby would achieve in life, and looked forward to our future journey together.
The rest of the pregnancy was fairly straightforward, there were additional scans to check the baby’s heart, and growth scans due to below average femur length and Gestational Diabetes, but the pregnancy itself was good and I enjoyed it. Although, I had a desperate craving for chocolate throughout, which could never be fully satisfied due to the diabetes!
I was induced at 39 weeks and had an amazingly quick labour of 59 minutes! Our Joshua was as desperate to meet his wonderful loving family as we were to meet him!
Yes, I satisfied the craving at last! Jon brought me a bar of mint chocolate, which I devoured that night on the ward. The next day I sent him off to Costa for a large hot chocolate and something sweet, which he chose a Millionaire’s Shortbread and their Chocolate Tiffin! Never before had chocolate tasted so good, I ate it all and did not feel the least bit guilty!!
Joshua was just beautiful; he mastered breastfeeding immediately, and straight away started to enjoy his sleep! The genetic testing confirmed the diagnosis of Down syndrome, and we were in hospital for a week after birth, due to him being jaundice as well as getting an eye infection, and needing additional checks and tests.
Joshua endured a few rounds of the ultra violet lights for the jaundice, but due to the extra equipment he needed, we got moved to a private room…count the blessings!! He was quite happy for the first round on the light box, lovely and snug tucked up in a warm sleeping bag! However, he did not like the second round being under the lights, as he had to wear an eye mask to protect his eyes, and he hated every minute of it. There was no sleep for me at all that night as it was so distressing to see him upset. He had many blood samples taken from his feet throughout the week, and his heels were like pincushions, but I think I found that more distressing than he did!
Unfortunately, due to on-going covid restrictions, Georgia was not able to come to see us in hospital, but it did not stop her proudly showing off a photo of her new baby brother, which she carried around nursery with her for two whole days, showed it to everyone and told them all about her “Baby Joshua!”
I missed Georgia greatly whilst in hospital. Thankfully we have technology to ease that somewhat, and so we video called, and I sent her many photos and videos of her Baby Joshua. It was a good time for Joshua and I to bond and whilst I would of course have rather been at home, I am grateful to have had that time for just the two of us without other distractions and we could just take time to get to know each other.
Finally we got to take our lovely boy home and he got to meet his big sister in person. Georgia adored him and continues to adore him more and more each day. She always wants to help out with him, gives him an incredible amount of kisses and cuddles, and has never shown any sign of anything but love for him. Their bond already is truly magical and I hope it continues that way throughout their lives.
Joshua is thriving, he was slow to gain weight at first, but we have solely breastfed and he’s a lovely healthy weight and growing fast! He failed initial hearing tests and a hearing aid was looking likely, but then he passed the tests and his hearing was considered to be in the normal range. His body is very flexible and he mastered rolling over at just four months old. Follow up heart scans, hearing tests, eye tests and blood tests have so far been good with no issues, which is a relief, and we hope his health continues to stay good throughout his life.
Joshua’s infectious smile is just beautiful and he already has such a happy little personality. He chats to us in his own way already, and is actually really quite vocal at times! He loves cuddles, enjoys watching his sister play, loves his sleep, and makes us smile every day.
I started on a quote, so will also close on another that I love: ‘Life doesn’t have to be perfect, it must be amazing’ and it certainly is that!