Happy 15th Samantha Leanne

On this day 15 years ago, Samantha Leanne was born 9/5/95 at a whopping 4.5 lbs. (5.5 would have fit better with my dates. Or 9.5!) We'd known in July of the pregnancy that something was off. I went for my monthly checkup and the belly measurement had not changed from June. They sent for an ultrasound that showed her way behind in her growth for her due date. July and August I was on bedrest, leaving bed only for the weekly drive into see the doctor for another ultrasound. They couldn't tell us what was wrong, only that the diagnosis was IUGR (Intrauterine Growth Retardation). By the first week of Sept she had gotten to four pounds and they decided to induce labor. Her original projected due date was Sept. 12, so her lungs should have had time to completely develop by then.

Sept. 5 we showed up at the College Station hospital and I was adamant about getting an epidural this time around after the all-natural hell of Nick's birth. Unfortunately I got more than I bargained for. They started the pitocin and hooked her heart rate up on the monitor. Within minutes at every slight contraction that I could barely feel, her heart rate plummeted.

The epidural was neck-down total paralysis as I was wheeled into emergency surgery and cut open before she died. Her umbilical cord was the length of a pencil. She would never have survived a regular birth.

But she was completely healthy, tiny and feisty from the start and stayed that way. At her one year check-up she weighed 12 pounds. She walked at 7 months (no weight to hold her back) and didn't fit into size 0 newborn shoes until 10 months. People would coo at her like a newborn and she would smile at them and say, "hi" which was always good for a laugh. For two years we met with specialists who tested her for all sorts of terrifying diagnoses. Finally, right before her second birthday, we met with a pediatric endocrinologist who had been in the field for 20 years. He looked her over for 5 minutes and said, "That's Russell-Silver Syndrome."

And everyone said, "it's what?"

And everyone to this day still says, "it's what?"

Her pediatrician had never heard of it. These were the days before the internet, so there were no support groups sharing tips and doctors and regimens. Now I know that she has a very mild form of it compared to other RSS kids. We never had to use a feeding tube because of her failure to thrive, or any of the other myriad of challenges some of these kids face.

But when we saw the cluster of markers, we knew immediately all the little quirks were related to RSS.

So in the interest of public knowledge, from the Magic Foundation site on RSS, here are all but three of the symptoms found in the rare RSS phenotype that Samantha shares:

• body asymmetry -Sammi's left side is bigger, longer arm and leg, bigger hand.
• inadequate catch-up growth in first 2 years
• persistently low weight-for-height
• lack of muscle mass and/or poor muscle tone
• broad forehead
• large head size for body size
• hypoplastic (underdeveloped) chin & midface
• downturned corners of mouth & thin upper lip
• high-arched palate
• small, crowded teeth
• low-set, posteriorly rotated &/or prominent ears
• unusually, high-pitched voice in early years
• clinodactly (inward curving) of the 5th finger
• syndactyly (webbing) of the 2nd and 3rd toes
• dimples in the posterior shoulders and hips
• narrow, flat feet

Sammi's asymmetry did not result in scoliosis, which is common in RSS kids, but it did hurt her in the years she was competing in gymnastics. Back hand springs were especially hard on her left-side because the longer arm hit the ground first ahead of the her right hand. Her hands were so tiny, it was very difficult to get a complete grip on the bars. But she rocked the balance beam! Her feet were so small, it was like walking on the sidewalk.

Other than putting up with short jokes now and being asked if she wants a kids menu with crayons occasionally (which I still like to play with) it's not something that comes up very often. Jeans that don't drag the ground but put up with the curves she got from me are hard to find, although what woman doesn't search her entire life for the perfect jeans? Ok, and wearing a size 2 doesn't make shoe shopping a lot of fun, either.

But as she turns 15 and I remember that tiny little baby that was swallowed in her premie size clothes, I am so thankful for the miracle of her survival and the continual blessings she brings to my life.

She's in Lake Oswego Oregon this weekend to visit her best friend Emily and soak up the Pacific Northwest. She's my traveler whom I fully expect will study abroad and go to film school at NYU for a few years before hopping the Atlantic to attend the Cordon Bleu in Paris. We celebrated by going to the John Mayer concert Wed. at Red Rocks and will do up the birthday cake Monday, just a day late, for one spectacularly cool, awesomely artistic, beautiful baby 15 year old.

I love you Samantha Leanne!