“My husband and I began our relationship in March of 2002. I was 15 and he was 17. We were inseparable from that day on. We always knew we wanted kids and wanted them fairly young, so when he proposed when I was 20, we decided that if it happened then it happened. Guess what happened right away? A day before my bridal shower we found out we were expecting our first baby. We got married a few months later and had our beautiful son Kai that November. He was the perfect first child, happy and easy going. So, it was a no brainer for us when he was 1.5 years old that we wanted to have another baby so they could be close in age. Again, we were so blessed to find out we were expecting right away again.
A month after finding out we were expecting our 2nd child, I started to feel something was wrong. There was nothing that truly set the feeling off, I just felt deep in my core that something wasn’t right. I even brought it up to my family doctor at my monthly appointment that I felt like something was wrong, he shrugged it off and said it was normal jitters. When it came to our anatomy scan at 20 weeks pregnant, I noticed the ultrasound was taking a while and she told me she was just having a hard time getting some measurements. She missed a few so she scheduled me to come back another day. The next ultrasound was much the same, she said he was being stubborn and yet again we were rebooked. The third time we had the ultrasound I told myself everything was fine and just enjoy seeing your baby again.
The next day I got the call. ‘Jessica, can you come into the doctor’s office tonight?’ I was just heading out the door for work, but she said, ‘Jessica, you need to come in now please’. So, we rushed to the office and as we waited my husband held me as I cried. I was terrified. When they called us in, they told us that he has short limbs and that they were sending us to a more equipped hospital an hour away the next day. We thought ‘okay, he has dwarfism, we can handle that’.
The next day we had our big ultrasound and 5 hours later we were brought into a room with 5 or 6 doctors sitting in a semi-circle. They explained that our baby had either a condition called Campomelic Dysplasia or Osteogenesis Imperfecta, but thought it was Campomelic Dysplasia, because his bones looked good on the ultrasound. We were told that it wasn’t compatible with life and he would die shortly after birth from respiratory distress, we were given the option to terminate at 7 months pregnant, but we decided that we wanted to give him a fighting chance. We were absolutely devastated, I cried all the time. My husband once walked into our bedroom and saw me bawling and listening to sad music while staring at his ultrasound, he said to me ‘He’s not dead yet’ he always refused to believe he was going to die.
At 9 months pregnant they informed us they didn’t think he had Campomelic Dysplasia anymore but were unsure what was wrong. They also didn’t think he would die at birth anymore. On March 24th, 2010 our beautiful boy Reiko (Rye-ko) was born, everything happened perfectly and after a quick hello, they whisked him to the NICU ‘just to be safe’.
About 4 hours later we were able to go see our boy and that was when we walked into an absolutely heartbreaking scene. Reiko was now covered in wires and splints. They took us aside to show us that Reiko had Osteogenesis Imperfecta type 3 (severe), he had 7 broken bones, some healing from in utero and some from the birth. They showed us the x-rays they took and some of his bones barely showed up as they were so thin, his skull looked as thin as a piece of paper. The next 5 weeks he spent in the NICU as we tried to figure out how to move this incredibly fragile baby.
When he was released from the NICU with a few new fractures, we never realized how often our poor sweet boy would fracture. Reiko doesn’t have to even move for a fracture to happen. So often he would be laying on a pillow in our lap or lying in bed or in his chair and we would hear the ‘snap’ of a bone and his color drain and then see him go deep red and scream. When he was a few months old he was holding a rattle maybe weighing 1 oz, and it snapped his collarbone so bad it took a piece off. His first-year of life he had about 80 fractures. On top of his fractures, he would often get pneumonia and couldn’t cough because it would cause rib fractures.
He was in and out of the hospital due to pneumonia every 2 weeks from the end of August 2010 to April 2011. Our other son Kai was almost 3 and he just couldn’t understand why his mom was gone all the time and why he had to be so careful around his baby brother. One time he was so excited to see his grandma walk in the door that he tripped over Reiko’s chair and broke his leg, Kai was crying so hard and kept saying ‘I’m so sorry mama’, even at 3 he knew how much pain Reiko was in and it broke his heart.
As the years have gone on, he doesn’t fracture nearly as often. Usually a few a month but he is now at over 500 fractures. He has had 14 surgeries and countless hospitalizations and yet he is the most happy and easy-going kid. He is so very loved by everyone who meets him, and he never complains. Reiko has had 2 major surgeries in the last 2 months, and I haven’t heard him complain about it once.
We don’t know what his future will hold, we realized a few years ago that Reiko will never be able to walk, but he is able to bumscoot instead, he cannot stand but we are hoping with his latest 2 surgeries, he will be able to get that function.
We eventually decided to have another baby and after a miscarriage, we got pregnant with our son Xander. Having Xander helped me mentally so very much. Reiko started kindergarten and so it felt like I was having my first all over again, I was able to focus on nursing my new (very colicky) baby and let Reiko have more independence. I allowed him to be in the basement with his brother more, I allowed myself to sit and relax and be okay with not having him in my sight at all times.
When he was 5, Reiko got his Make-a-wish trip to Disney World, and just a few days before we were leaving, we were completely shocked to find out we were expecting again. It was never supposed to happen as my husband had a vasectomy and he had gone back for the testing and was given the all clear. So for me to get pregnant 4 months after the testing came back clear was a completely unexpected adventure. They retested my husband and sure enough they said the sperm were back! We just got used to the idea of having another baby when the day of our dating ultrasound we got an even bigger shock, I bet you can guess what happened next…. we were having twins!
At this point I felt like our life could have been a sitcom or a reality show. In June 2016 we had our twins, Brooke and Ashton. Life is sometimes complete chaos at our house and often times overwhelming for all of us, but we are so lucky! We deal with the surgeries and fractures 1 day at a time, and Reiko doesn’t let his disease ever get to him. We truly don’t know what the future will hold for him, but we know that whatever he does, he has a huge family and support group backing him up 100%.”
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