Well, today is Samantha’s 6th birthday and we just finished a birthday breakfast at Panera. When I think back to the beginning of her life I’m amazed at how far she has come. This is our story….
At my 20 week sonogram appointment, the doctor told us that the little girl inside me had very short and bowed limbs. His face, though, told me more – sorrow and regret. Something was very wrong. We were quickly referred to the specialists at St. Luke’s. (In case you’re wondering, an adult cannot deliver a baby at Children’s Mercy, even if the child will need their care right away after birth. Don’t ask me why. I assume because, technically, I’d be a patient too but not under 18.)
At St. Luke’s we had many tests run, an amniocentesis (which does NOT feel like a bee sting!), and high-tech ultrasounds up the wazoo. All to find out that Sami was either going to have Campomelic Dysplasia or Osteogenesis Imperfecta type II. Each time I went in there were more and more breaks of her bowed little bones. With either disease, the doctors told us (7 months into the pregnancy) to make her funeral plans as she wouldn’t live past 24 hours.
Luckily, we have a good friend who is a director of a funeral home. He came over to our house and gently guided us through the process and paperwork. That night was agonizing…feeling Sami kick inside of me while I sat at the dining room table talking over details and procedures. Finally, when the meeting was done, I went upstairs, lay in my son’s bed, and cried while holding him. He was having such a rough time at school and I thought that my sadness and anxiety over Sami must be affecting him. We would find out later that he has Aspergers Syndrome, a high functioning autism, on top of everything else.
As the day of delivery loomed closer, I began to dread it. Sami was safe in my belly, though broken, and I felt as if I was putting her to her death sentence at delivery. How could I do that? It ate at me night and day. I also questioned whether to finish the nursery or not. If we finished it and she died, I’d have to walk by it every day. If we didn’t finish it, it seemed as if we were giving up on her.
The morning of September 24th, nursery completed, Samantha came out wailing, “I’m here, deal with me”. Though I had a major c-section to get her out safely, she was still broken in many spots and healing other fractures all over her little body. We stayed at St. Luke’s for 4 days until a room opened up at Children’s Mercy. Once there it was confirmed that she had OI type III, the most severe a person can live with, instead of the lethal type II.
A new protocol came out of Canada’s Shriner’s Hospital to give children with OI a drug called Pamidronate. What that medicine does is slows the body’s natural tendency to rid itself of bad/old cells. Osteoclasts are in your body eating away at those bad/old bone cells so new, healthy bone can grow. OI is a genetic disease of collagen. Sami doesn’t have enough collagen and what she does have is so poor quality it’s not helpful. But, it’s all she has, so we don’t want the osteoclasts taking it away. The Pamidronate is given through an IV that takes about 4 hours each day, 2 days in a row, to administer. When Sami was an infant, she received treatment every 6 weeks, but now we are down to 16 week increments. Between breaks, appointments, and drug treatments our car could drive itself to the hospital for the first few years.
We also had adjustable rods put in her arms and legs. The first few surgeries didn’t go so well (pins poking out of elbows, YUK!), but now they are great. We found an OI Clinic in Omaha, NE with a fabulous ortho-surgeon that fixed Sami right up…..okay; as good as she can be fixed. The telescoping rods don’t prevent breaking, but do give her bones stability from the inside. Those rods will probably need to be changed out next year.
We still worry about common things like colds – coughing can crack ribs that could puncture lungs, falls, hearing loss – those little bones in your ears can break too, and a million other things for her safety. To be honest, it’s normal for us so we don’t give it much thought until asked about it, or read ‘Handle With Care’ by Jodi Picoult….tough read for me.
Starting Kindergarten brought a lot of Sami’s needed adaptations to the forefront. We built our house for her, but the school had to adapt and it was a challenge to think of all the details throughout her day in school. Kudos to her elementary staff and teachers!!! They bravely walked up to the plate and are doing wonderful.
Samantha is a feisty girl, with sass bigger than her dwarf 3ft frame, a quick mind, and spirit that is contagious. There are many times when we are supposed to be disclipling her and have to leave the room to laugh first. Her determination lets her bear crawl all over the place, take steps with her walker or around furniture and bring out her fashionista by changing clothes five times a day.
Sami is also sensitive. She hates being a dwarf and asks when she will be big like the other girls. Really, the dwarf part can be worked around (except at amusement parks – too short for the kiddie rides) but the brittle bones are what prevents her from doing most activities. It breaks my heart to have to teach her about discrimination from other people so early and hold her while she cries because someone made fun of her. The next OI conference is Aug 2010 in Portland, OR and will be interesting for Sami to connect with other kids who are just like her – not that there are many around the globe – but still she isn’t alone. WWW.OIF.ORG
Luckily, she has an older brother who dislikes her enough to pick on her for no apparent reason and parents who refuse to give in to all her whims…..unlike her grandparents As much as we can, we are mean to our kids (according to them) and make them do chores like all other kids, eat healthy food, limit their TV and computer time, and have good manners. She has friends everywhere we go and was once used in a marketing campaign for the Children’s Hospital in Omaha with her own billboards and magazine ads!
Samantha has taught me so much in these 6 years. How to be humble, how to laugh, how to cry, how to ask for help, when to accept and when to fight, how to take care of myself, how to be a better parent, a better woman. Being a parent to kids with extra needs means patience and creativity, schedules and open minds, good karma and loving yourself….all taught the hard way. I can’t wait to see what they teach me over the next 50 years!!