‘All babies born premature are floppy, aren’t they? We never noticed looking at our beautiful baby boy.’: After first child is ‘born sleeping,’ mom has son with Down syndrome, he’s the ‘life of the party’

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“Some journeys are short and others last a lifetime. For us, the journey started in November 2010 when we first met on a dating website. Things moved forward quickly for us and after a year and a snowy winter we decided to move in together. We both knew what we wanted out of life, we were excited to bring a child into the world.

We fell pregnant in November of 2012 and were over joyed with emotion when we found out. I had missed my period and the realization I may be pregnant became a reality. I said to Stuart ‘We may need to get a pregnancy test!’ Both of us were really excited. We took the test, one of those that not only tells you you’re pregnant but how far along you are. Peeing on a stick is a weird thing to do but I did it ,and I then left it on top of the toilet. Sitting with Stuart in the bedroom waiting those 3 minutes lasted a lifetime. I felt nervous yet excited and we went in to see the result. Lifting up the test stick we looked and turned to each other and said.’OH MY GOD WE’RE PREGNANT! WE’RE GOING TO HAVE A BABY!’

Courtesy of Kirsty Baxter

That was it, a new life to call our own, someone to look after, someone that needed us to guide them through the good times and the bad. But in March of 2013 that journey came to an abrupt end when at the 21 week scan we had the news no one should have to ever hear. ‘I’m sorry, we cannot find a heart beat.’ Devastated is an understatement. ‘What went wrong? What did I do?’ I asked myself. No answers I could find would soften the blow of giving birth to my baby girl Skye. She was born sleeping.

This was obviously a very sad time, but we also learned what something like this can do to a relationship. Talking helped and we stopped bottling it all up then exploding with anger and frustration. We soon realized this was just the start of another journey for us, and has helped our communication with each other in difficult times and through difficult circumstances. We also learned how other people act who have no idea how we feel. Sometimes it’s not what they say but how nice it was for them just to be there to listen. It’s even more surprising to find out how many people had gone through the same thing as us, and how many new friends we have made even though we wished we had met them under different circumstances.

Courtesy of Kirsty Baxter

We found solace in the form of support groups, and listening to others and their stories helped us realize we need to get through this together. It was no one’s fault, there was no blame, it was just one of those things. We never thought of separating, we had heard stories of those that had but for us it just made us stronger as a couple. Going through something so sad and heart wrenching and coming through the other side closer than ever gave us a sense of, ‘if we can get through this, we can get through anything together.’ My husband ended up being my rock.

December of 2013 and the next journey has just begun. We are pregnant again but it doesn’t feel like it did the first time. We should be feeling excited, happy, overjoyed, yet instead we are anxious, nervous and apprehensive.The hospital was amazing, we had a scan every month to keep an eye on us and every time they had the scanner on my belly we had our hearts pounding in our chests until we heard the heartbeat. Relief was an emotion we had in abundance through this pregnancy with our ‘rainbow baby.’ Our impatient Riley was ready a month early and after the final scan where the consultant said, ‘we are struggling to get the readings we need so please come back tomorrow, but come back prepared.’ ‘Prepared for what?’ we asked. ‘Prepared to have this baby!’ That’s when reality hit. We are having a baby!

As you may imagine, we didn’t get a lot of sleep that night, and before we knew it we were back the following morning, ready as we would ever be to have our baby. The journey was ready to take its next path, and with what happened next it most certainly was a curvy one.

After finally having Riley through an emergency c-section we were taken to our recovery room to be with our new baby boy. We phoned everyone to tell them ‘Riley is here and is ready to take on the world!’ We fell asleep in the hospital and awoke the next morning. Yes it was real, we had our little boy, no more anxiety, no more worry, he was here, he is ours. They came and took Riley for their routine tests to have a look over him and to make sure all was well. But when the doctor returned without Riley and he brought the curtain around us it was like BANG. Back again is the worry and the anxiety. ‘What is wrong? He was breathing when he went with you…what could be the issue?’ He proceeded to tell us ‘One of the nurses noticed last night that Riley was very floppy.’ ‘But all babies who are born premature are very floppy aren’t they?’ On further investigation there had been a few more signs that go hand in hand with what they described as ‘hypotonia’ (extra floppy), a crease in his hand, his eyes were slightly slanted, he had 3 soft spots on his head, his nose was a bit flatter, and the extra spacing between his big toe and the one next to it. All of which we never noticed when looking at our new beautiful baby boy. They thought it was best that they moved us to a private room and to go and see the specialist so they can explain what they found would mean to us and Riley.

Courtesy of Kirsty Baxter

‘Riley has Down Syndrome.’ are the words that we first heard and all we could do was cry. We were crying not because Riley has Down Syndrome because I was never going to love him any less but because we know how cruel this world can be. From the start of his life he was going to find it much harder to do anything that a typical baby will do. ‘Will he talk, will he walk, will he get a job, will he drive, will he get married?’ You will be surprised at how many questions can run through your head when you hear this about your baby at one day old. Some people get time to prepare, to understand, to rationalize what life may be like; but for us it was not the case.

We had to spend 2 weeks in the hospital, and what a long 2 weeks it was when all you want to do is take your baby home. Riley had to be fed through a tube due to his low muscle tone so he could not breastfeed or take a bottle. We were trying to come to terms with how our life is going to be. The hospital gave us information to read up on and the one poem that stood out was about the ‘Holiday to Holland.’ The best way to describe it is you booked your dream holiday to Florida and for 9 months you have been waiting to go, you get on the airplane and you start your journey. But then the plane lands and you get off and  find yourself in Holland. That wasn’t where you were supposed to go. But after a short time you realize this may be different to what you planned but it is just different, and maybe even better.

You always hear stories of how bad hospitals are. You only really hear the negative side, but for us in this instance, we could not praise our hospital enough. We had to stay 2 weeks following the birth of Riley, most of this time I was in bed trying to recover from the c-section, and they made Stuart feel just as welcome after moving us to a private room. They fed us and helped out immensely with Riley as he had to be tube fed and we were unable to do this from the start. They kept us fully updated with everything that was happening from tests that they were carrying out to how I was getting on. Family were just as supportive, the grandparents came down to see their new grandchild, sisters and friends also showed up for us. Just like us, all they could see was a beautiful baby boy, living and breathing.

After the hospital was happy that we were able to tube feed Riley safely they let us go home. That was harrowing enough, waking up every 4 hours and tube feeding Riley, trying to get him to take a bottle and breastfeed at the same and also expressing my milk. He finally did take the bottle, and WOW what a feeling it was. Then it became ‘When will he roll over? When will he sit up? When will he crawl? Walk? Talk?’ We don’t know, but we do know he will in his own time.

Courtesy of Kirsty Baxter

The hardest thing was comparing Riley to children of his age which we shouldn’t have done but we just couldn’t help it. ‘So and so’ is crawling already and Riley is still struggling to sit up on his own, etc. In his own time he has managed all of this with great determination. It’s just other people’s lack of education that is the hardest part and also other children’s naivety. We were at a party and a little boy came up to me and said, ‘Why isn’t Riley talking to me, I’m asking him questions and he won’t answer me.’  Try to explain to a four year old that Riley talks with his hands at the moment as he has been learning sign language. A quote from one parent when we told them Riley will be going into a mainstream school was along the lines of, ‘How will he be able to get on with other children?’ It’s funny now as this little boy is one of Riley’s current best friends! And my god is Riley popular! He has brought smiles wherever he goes. He can be the center of attention at a party even when it’s not his party. He is his own character, the same as every child.

Courtesy of Kirsty Baxter

Riley has become quite a celebrity at his school as he has been signed to a modeling agency called Zebedee Management. He has also modeled for Mothercare, Jools Olivers Little Bird Collection and Little Green Radicals organic clothing. He surpasses all our expectations a little later than most but that’s what makes Riley who he is. Someone else spoke about Riley ‘It is amazing how the lack of one small chromosome can take away all the evil and hatred and make someone so happy and loving.’ Riley has just turned 5 and we cannot wait to find out what the next part of our journey will bring.

Courtesy of Kirsty Baxter

What Riley has already achieved in 5 years is more than we could have ever imagined. There will be some tough and turbulent times ahead and we would be silly not to realize that, but as a family we have already proven that we can get through anything together and that will certainly carry on through the rest of our lives. There are too many things to get excited about for the future and our sense of achievement gives us that warm feeling inside only a parent can feel about what their baby is doing.

Courtesy of Kirsty Baxter

The advice we would give to anyone who feels life will be tough having a child with additional needs, don’t worry, life is challenging just raising any child! There will be ups and downs but your child will show you more love than you could ever imagine possible. You wouldn’t give up on your dreams so don’t give up on theirs!”

Courtesy of Kirsty Baxter

This story was submitted to Love What Matters by Kirsty Baxter. You can follow her journey on InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories about babies born with Down Syndrome here:

‘My daughter Penny is not a ‘mistake.’ She is perfection.’: Down syndrome mom explains the difference between ‘inclusion’ and helping special needs individuals ‘belong’

‘She was the most beautiful baby. But I felt helpless. My wife in the NICU crying, my child on a stretcher crying.’: 2 moms welcome daughter with Down syndrome after miscarriages, she’s ‘the best thing has happened to us’

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