“I was 41 weeks pregnant, it was a Sunday and I was booked in at the hospital for a check-up with my midwife. She was quite certain I wouldn’t need this appointment and I would have given birth by then, as I was already 4cm dilated and my water was ready to burst. But there I was, hooked up to the monitors listening to our baby’s heart beating steadily. The midwife gave me another stretch and sweep (my second) in hopes of bringing the labor on. She was confident I would be calling her that evening to tell her that contractions had started, but she told me that if that didn’t happen, then she wanted me to get a growth scan to double check fluid levels, etc.
Nothing happened that evening, so come Monday morning I called the ultrasound place and managed to book in a 9:30 appointment. Normally my husband Matt would come with me to these scans but I went on my own because our 3-year-old, Beau, was sick and he needed to stay home to look after him. It would have been unfair to drag him out with us for such a routine scan when I was more than ok going by myself. I lay on the chair with my big overdue belly on show and watched the screen as the technician showed me his strong heart and his boy bits. ‘The only thing I worry about is his size,’ I said, smiling. I was terrified of having to push out anything bigger than 8lb which was what Beau was. How ironic now, come to think of it.
The technician told me that his long bones (arms and legs) were not measuring as they should be. That’s all it took for the tears to start. I asked him why they weren’t measuring as they should be, but he couldn’t tell me any more than that. He asked me to call my husband so that he could talk to him. He was concerned about me driving home on my own and needed to know that Matt would be there waiting for me. I asked him what the next step would be, and he told me he would call my midwife who would then get in touch to arrange a time to meet at the hospital. I drove home, the crying becoming more intense, and I called my mom to explain what had happened. She left work and came straight over and we waited. Mom, Matt and me plus a very sick Beau. I went over and over in my mind the possibilities. I didn’t dare google anything because I knew that would tip me over the edge. My mind went places I couldn’t control, and all of a sudden I was picturing our family with a little boy in a wheel chair, unable to walk. Then I considered the alternative option, what if we never got that little boy because whatever is wrong could make him incompatible with life? What if I was about to give birth to a baby that had no chance of survival?
The midwife called and told us to meet her at the hospital at 2 p.m. where we would talk with a specialist about the results of the scan. The hours we spent waiting for that meeting were probably the longest of my life. The time came to leave for the hospital. I packed my bags in the car just in case. I had a feeling this baby was coming today.
We arrived at the hospital and sat in the waiting room. If you think the wait is long for an everyday trip to the doctors, I can assure you it feels ten times longer when you are in a situation like this. None of us said a lot while we waited. The midwife told us she had no idea what the problem could be, but I didn’t believe her. She has to say that, I thought. We were finally taken into a small room where Matt and I sat opposite the doctor. He was foreign, so he spoke English, but everything was slower while he searched for the right words to use. I don’t remember a lot from this room. I have relied on Matt to fill me in on what went on. But I do remember the first time I heard the word Achondroplasia, and I remember the doctor putting it into terms that we would understand.
‘Dwarfism,’ he said. ‘Your son will most likely have dwarfism.’ ‘Oh, is that all?,’ I thought. Well that’s ok. We can deal with that. But then a thought came in to my head. I don’t know where it came from, I guess it was just lack of knowledge at the time. I asked the doctor, ‘Don’t people with dwarfism have a shorter life expectancy?’ ‘Well, that would be news to me,’ he said. Relief washed over me. He then went on to tell us (the first of many sentences containing ‘he can’t’ or ‘he won’t’) that our son would never be a rugby player. Well, we will see about that.
It is here I should point out that Leo’s type of dwarfism, achondroplasia, is not necessarily genetic (although now that Leo carries the gene, it can be passed on to his children). 80% of babies born with achondroplasia are born to two average height parents. As I sat at home waiting for this appointment, not once had it crossed my mind that our baby could have dwarfism. I just didn’t think it was a possibility.
Up until this point I hadn’t thought too much about how Matt was feeling about all of this. It’s not that I didn’t care, I guess my mind had just been elsewhere. But now that we had received a diagnosis, I felt I needed to comfort him. I told him that this was no big deal, that we could handle it. He was healthy and his heartbeat was strong, so we were lucky in that respect. I called my mom. ‘We will be having a ‘special’ baby,’ I said. ‘Our boy will have dwarfism.’ And that’s about as much as I remember. The next part I remember was telling the midwife I couldn’t leave the hospital without our baby. I was booked in for an induction in three days’ time, but how could I be expected to go home and actually function for those few days? I knew I wouldn’t get any sleep, and that would be no good for when I went into labor. Apparently the maternity ward was full, so they couldn’t fit me in. ‘Great,’ I thought. ‘These women get to have their babies today and it will probably be the best day of their lives. Why can’t I have that?’ I think the midwife sensed my pain and anxiety so she worked her magic and found me a bed. She probably also realized I wasn’t going to leave that hospital, so she had to do something about it.
And that’s when it all started. I won’t go into too much detail, because labor is labor and while some say it is beautiful and other worldly, mine was not. The midwife broke my water and the contractions began straight away. It involved pain, both physical and emotional. I remember a comment from the midwife that went something like, ‘don’t worry, when he’s here you can wrap him up in a blanket and nobody will ever know he’s different.’ I cursed my way through each contraction as I sucked on the gas and then vomited up my organic raspberry drink from earlier in the day. In between contractions, I imagined what our life was going to be like once he arrived. But thankfully my mind didn’t have a chance to wander too far before I was reaching for the gas again, feeling the onset of the next wave of pain. Throughout my pregnancy the midwife had told me that second babies always come out faster than the first. She told me it would be a quick labor with very little pushing. For some reason I never believed her, and I was right not to. I labored for eight hours in total, two of those hours were spent pushing. I have since heard it is quite uncommon to give birth vaginally to a baby with this condition, due to the size of their head. Not only did I deliver vaginally, but I did it with nothing but gas. There is absolutely nothing wrong with pain relief and I fully support those who choose to use it, but I definitely feel like Wonder Woman because of this, which I think I’m entitled to.
The one thing I will always remember about Leo’s birth – is watching him come out. After a long and hard eight hours, this was the part that was beautiful and other worldly. Then I was bought back to reality when he was laid on my chest and he did the biggest poo you could ever imagine. I didn’t care at the time, because I finally had my baby. But this was the reason we were kept in for two nights, to watch his oxygen levels in case he had taken on any of the meconium while he was inside me.
Over the next few hours I was still in the mindset of needing to comfort Matt. To tell him that everything was ok, and that this wasn’t going to change anything about our lives. We would carry on as usual with our boys, but we would adapt our lives to suit someone a little smaller. It wasn’t until the next day, after a sleepless night alone in the hospital room with Leo, that I began to unravel. The emotional pain set in and I began to grieve the baby I thought I was going to have. I say grieve because that’s exactly what it is. I had to come to terms with the fact this baby was very different to the one I had imagined. I needed to begin the process of letting go.
I cried a lot in that hospital room, and although there were people constantly checking in on us, I have never felt more alone. Then the pediatrics team arrived. They asked me what I already knew about Leo and his condition. Nothing, I realized I knew absolutely nothing. How could I? I’d had no time to research it. And there was no way I was going to type it into google and risk seeing what came up. It was then we were told of the medical aspects to this diagnosis. Not only was Leo going to be smaller than his peers, he will also likely face the common health issues associated with achondroplasia. This was all too much. I remember looking at Leo and thinking, ‘How can this be his future when he seems so healthy and so ‘normal.’’ The day went by with visits from family and more medical people. I wanted to go home so badly but they told me they still needed to monitor Leo, so that was out of the question. So, we stayed another night, and his time I had my mom with me. I was too scared to be on my own with my thoughts and I needed Matt to be at home with Beau. Mom slept on an armchair at the end of my hospital bed, and in the middle of the night I heard this almighty crash. The chair had tipped backwards, and mom had ended up on the floor. I will ever forget the first time I had laughed since this whole ordeal began. Thank you Mom, your misfortune was hilarious at the time, and still is as I think about it now.
We were sent off for x-rays to confirm the diagnosis the next morning. Matt held him on the table because I couldn’t bring myself to do it, while I talked on the phone to mom who had gone home to be with Beau. She told me Beau had been to the doctor and had come home with antibiotics for a double ear and throat infection. Could it get any worse? Both of my boys needed me and I couldn’t help either of them. If there has ever been a time where I felt I was failing as a mother, this was it. I knew these were all situations beyond my control, but having just given birth 12 hours earlier, my hormones were at an all-time high. More tears, more anxiety.
After waiting for the results of the x-rays for five hours, we were told they wouldn’t be ready that day so we were discharged. And so began the next part of our journey, having our family at home. This is where the tables turned, and it was Matt who needed to do the reassuring. I was no longer capable of being the strong, supportive mother and wife I thought I could be. I guess this is what they call the baby blues, and they had truly set in. I don’t think I showered for a good three days, partly because of the physical pain I was in from the birth, but also because I couldn’t bring myself to get out of my pyjamas and put on fresh clothes. I couldn’t eat, which made me anxious that my milk supply would be affected. Such simple acts I would ordinarily take for granted were pushed into the ‘too hard’ basket.
There were times I cried more tears than I thought possible, most of them at night while I was up feeding. And there were times I cried just a little before pulling myself together. This was usually because something would set me off, like the part in the ‘Welcome to Holland’ story where it says ‘But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay,’ each time I sat on Beau’s bed to read him a story before he went to sleep, or whenever I spoke to somebody for the first time since his birth. I could not have gotten through this without the support of my amazing husband, and I will be forever thankful for the way he took control and got us through those hard days. He completely accepted the state I was in and that I needed time to heal. He cooked, cleaned and paid extra special attention to Beau. He did all of this while battling the chest infection he had picked up. No one in our house has ever been sicker than that first week we were home. It was not an ideal situation to bring a newborn into, that’s for sure. But we were home, and that’s where we needed to be, to begin our life with this baby boy who we definitely weren’t expecting, but who had been given to us to love and take care of the best way we knew how.
At the beginning I was scared to love, to grow attached and to connect with Leo because, being a mom already, I was aware of the hurt I would feel further down the track when it came to health concerns and potential surgeries. There is nothing worse than seeing your child in pain or discomfort, all moms know that. The thought of having to go through this made me hold something back. I wished those early days away every single minute of every day. I longed for the day I could stop worrying and know that everything was going to be ok.
Fast forward to now and I’m proud of how far I have come. Leo is now 19 months old and without even realizing it, we have finally arrived at a place of contentment. I no longer see his diagnosis when I look at him. Instead, I see a determined and adorable little boy trying his hardest to keep up with his older brother, dancing to every tune he hears and making friends at his new daycare. Of course I will never forget he has dwarfism, but I can easily forget he is any different to any other typical child, because in so many ways he is the same. Same determination, same cheekiness, same ability to steal everyone’s heart the moment they meet him.
I know we still have a long way to go on this journey, it is continuous and there will always be days where I doubt myself and wonder if I am strong enough to deal with this. But if I have learned anything from this curve ball we have been thrown, it is that worry is the thief of all joy. It is so important to just take one day at a time and enjoy those special moments with Leo because we won’t get them back. That, and that great things come in small packages.”
This story was submitted to Love What Matters by Olivia Hewetson of New Zealand. You can follow their journey on Instagram. Does your child have a unique and beautiful difference? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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