Written January 2012, a few weeks after Declan’s birth
Declan: My one in a million
Okay, technically not one million, but my little man is pretty special. There was much higher chance of having a baby with Down Syndrome (over 40 times more likely) or even having triplets (4-5 times more likely). Yes, in the past few weeks I have been determined (or distracting myself) with finding the prevalence of other congenital ‘conditions’. It’s still hard to wrap my brain around the fact that this happened. And to have a seemingly healthy, uncomplicated ‘perfect’ pregnancy. You might not officially be one in a million Declan (it’s more like 1 in 40,000), but you are my one in a million.
This is your story.
It’s a boy! 10 fingers? Check. 10 toes? Check. But still, looking back at the photos taken right after our beautiful son was born; I had a worried look on my face.
This story begins before the cold December night you were born. My pregnancy went very smoothly, there were never any concerns and I was always measuring right where I should be. Around the 30 week mark, I started having pelvic pain, so I had to make sure to get in some rest with my feet up, not always an easy task with chasing after your big sister and with your dad working out of town, but we managed pretty well.
Before long it was November and nobody expected me to make it to my due date of December 1st. Well, that day came and went and you were still quite cozy on the inside. During the last few weeks there were many times (especially at night) when I thought I was going into labour, but the contractions ended up fading away and I would eventually fall asleep. You seem to be giving me practice for the real thing. Despite that everyone thought you would be here by now, you my little man, had other ideas. My midwife made an appointment for an ultrasound at 41 weeks, to make sure everything was looking good, but assured me that I probably wouldn’t make it that far. But of course, December 8th rolls around and I’m 41 weeks pregnant! My ultrasound was scheduled for the afternoon, but first I had my weekly appointment with the midwives. At this point I was more than eager to get the show on the road and when she checked me, I was 4cms dilated and she could hardly believe I was not already in labour. I left that appointment with a recipe for a ‘labour cocktail’ that she suggested I try, since my body seemed to be quite ready to have you, she thought I just needed a little push to get things going. After my appointment, your dad and I ran all over town trying to round up the ingredients for the magic cocktail that I knew would do the trick. Even though I thought we would have met by now, I had a strong feeling on this day. It was real. I knew this was going to be it.
We got home and had just a few minutes to eat a quick lunch before heading out to the ultrasound appointment. The ultrasound seemed to go well; the technician took her time getting all your measurements and let your dad come in at the end of a quick peek at our big baby. She estimated your weight at 9lb 9oz, which didn’t surprise me, as your sister was just over 9 pounds and I knew you would be at least as big as she was, plus I was pregnant for a week longer at this point!
We headed home, anxious to whip up the cocktail and see if things would start. I got everything in the blender and drank a cup before I needed to use the washroom. Just after doing my business, I stood up and….. my water broke! I couldn’t believe it. I paged my midwife to let her know and she suggested I stay at home until my contractions picked up. I was a little nervous, as the other midwife mentioned that if my water broke spontaneously, things could go pretty quickly. However, I wasn’t having contractions right away, so I got comfy on the couch and prepped with the laptop to start timing them. I had a couple mild pains, when the midwife called back just a short while later.
This is the turning point in your story, my sweet little guy.
She told me that after examining the ultrasound images, the radiologist saw some concerns. Some of your bones were measuring smaller than they should be, your head was measuring large, and I had a very large amount of amniotic fluid in me. Because of the combination of these things, my midwife consulted with the OB and pediatrician on call, and we were to head to the hospital immediately to meet with everyone. This caught me by such a huge surprise, I never would have thought I would get so far along in my pregnancy to find out something might be wrong at this point. I was scared, but was just trying to focus on the fact that you were coming! My water had broken and this was it. Scared yet optimistic and nervously excited, all rolled into one. I started throwing things into my hospital bag and just a few minutes later, your dad and I were on our way to the hospital.
I had a few contractions on the drive, and I knew things were progressing. I made my way up to labour and delivery while your dad parked the car. I met our midwife and she led me into our birthing room. At some point, the OB came in and talked a bit to us about why he was consulted and what they saw during my ultrasound. I remember telling myself that ultrasounds are not always very accurate in their measurements, and what do they know – your sister had a huge head when she was born…it runs in the family. My contractions gradually picked up and around 6pm, my midwife ran out to grab some food and dad did the same for us. They were both back after only about half an hour and I was still managing pretty good. But the contractions were slowly intensifying. Your aunty came to support me during labour as well, and not long after she arrived, I was leaning on the hospital bed, swaying my hips right in front of where she and your dad were sitting, and splash! My water broke…again! And it just kept on coming! I waddled into the bathroom, and it just kept coming and coming. I guess they were right about one thing; I did have a really large amount of fluid in me. Could they be right about everything else? It crossed my mind briefly, but I was honestly just focused on safely bringing you into this world.
After my water broke for the second time, contractions picked up in frequency and intensity. I didn’t have much of a break before the next one was starting. I found it really hard to move, even between contractions, as I was feeling a lot of pain, paralyzing pain, near the front of my pelvic bone. With a lot of help, I made it onto the bed, as I had been standing and leaning against the bed for a few hours already; I was getting tired and felt the need to change positions. I remember trying the birthing ball, but it felt horribly uncomfortable. Once I was on the bed, I still had a hard time moving, the pain was intensifying. I stayed in the same position for a long time, as I just couldn’t move. I really didn’t think I was going to be able to do it, and I asked (begged, screamed!) for an epidural. I know the midwife was stalling and eventually said she would have to check me first, and of course by the time she checked me, I was fully dilated and it was too late.
I was looking forward to the pushing stage, as I didn’t think it would take too many pushes to get you out, but it was harder than I anticipated (remember that big head?). I pushed for about 20 minutes before you were born. They put you right to my chest and all I remember was asking over and over “is he okay?”. At this point, I had no idea what could be wrong, even if their concerns were confirmed. At the same time, I was so happy you had finally arrived! All of that hard work and pain was over in an instant and our beautiful boy had arrived. I got to hold you for a few minutes, while the midwife waited to clamp the cord, and then your dad cut it. The pediatrician on call was also in the delivery room and it wasn’t long before they whisked you away to check you over. At this point I had totally forgotten about the camera! I was yelling at aunty to grab my camera out of my bag and start snapping some pictures! Once they had a good look at you, I was told you would have to go for an x-ray right away. Because of the huge amount of fluid in me (polyhydramnios), they were concerned that there might be a problem with your ability to swallow and your esophagus perhaps not leading to your stomach. So at just a few minutes old, they had to put a tube down your throat for the x-ray so they could make sure everything was where it was supposed to be. You were brought back to me before too much time had passed and the pediatrician took the tube out and reported that everything looked fine, so I was able to nurse you and enjoy some skin to skin time. Things (information they told us) were a bit of a blur at this point. I know they confirmed that the concerns they noticed on the ultrasound were in fact reality. Your humorous bones and femur bones appeared to be disproportionately small, compared to the rest of your body, and your head was disproportionately larger. They didn’t really say what this could mean, but they would be doing more tests and x-rays (of those bones, which would give a more definitive answer than just a visual inspection) the following day.
By the time we got settled into our hospital room, it was after midnight, and you and I snuggled in for our first night together while your dad went home to rest. You were perfect in my eyes. I can’t say that I thought anything was really wrong, but as morning came…so did the multitude of tests. You were taken away from me for blood work and x-rays and yet no one really had any answers (or they weren’t telling me anything). I was thinking that maybe you would just have shorter arms and legs than the average person, but that’s not big deal, right? The morning after you were born I remember your dad and the midwife chatting quietly and she threw out the term ‘dwarfism’. Possibly a form a dwarfism. Wow. Is that possible? I didn’t know. Your dad is 6’2” and I am 5’8”, really? But still, no one really had any definitive information. I continued to nurse you, as you were (and still are!) a hungry, growing boy! We nursed and slept, over and over again, for those 2 days we spent in the hospital. I was just focused on keeping my little bundle healthy and happy. We left the hospital with an appointment to see a geneticist in Victoria just a few days later.
Once we were home, my priorities were the same; to feed my little guy and make sure you were having lots of wet and dirty diapers, while hoping for some sleep in between. When you were just 1 week old, we made the trip down to Victoria to meet with the geneticist at the hospital. After a thorough medical history of me and your dad, and some questions about my pregnancy and our families, they examined you. While the results of the genetic testing blood work has not come back yet (to confirm 100%), they are almost certain you, my 10 pound baby boy!, have the most common type of dwarfism, achondroplasia. Most babies born with this condition are born to parents of average size, and it’s caused by a completely random genetic mutation that would have happened just before conception.
Looking back, it wasn’t until this day that it all felt real, like you weren’t the ‘normal’, ‘healthy’ baby that every expecting parent hopes and wishes for (and dare I say it, expects). Yet, at the same time, I knew. I knew right after I gave birth and the room was full of those specialists and doctors that weren’t supposed to be there. I knew. I knew when I kept asking ‘Is he okay? Is he okay?’. The worried looks in the photos from that night tell me, I knew. I knew it couldn’t be coincidence and all of these signs and your physical features did point to something we didn’t expect.
But you know what? You are amazing. You are my perfect, thriving little baby boy that I didn’t think would be possible to love this much. So much. I truly believe that I was meant to be your mother. I often find myself thinking I should be more concerned about this or that, but I’m not. I’m focused on enjoying every single ounce of your newborn baby goodness. Your luscious new baby smell, your amazingly soft hair and skin, your barely there wispy blonde eyelashes, your funny little grunts and noises, and the first wonderful smiles and coos that are emerging from your cute little lips. While I’m not oblivious to reality; you’ve already had your first stay in the pediatric ICU (for a sleep study), you’ll be having an MRI of your brain in the coming weeks, and there will be years of occupational and physical therapy, I’m not worried. I know you’re going to be okay and you will be an amazing person. I am so proud to be called your mom. You are going to teach me a great many things.