1% Survival Rate

HER MIRACLE

STORY AND PHOTOS BY JEN SALVEVOLD

One percent survival rate. It sounds like a tabloid headliner. But for our family it is a quiet and sometimes unspoken topic. Today, I will be vulnerable because as the holidays are upon us, I am grateful and blessed.

If I’m being straightforward, my oldest daughter is lucky to be alive. She was born with a condition called Turner Syndrome. According to available research, Monosomy X is present in 1-2% of all conceptions, leaving about 99% of affected baby girls miscarried or stillborn. Statistics show 1 in every 2,500 newborn baby girls have Turner Syndrome (Monosomy X), leaving this disorder in the rank of being rare.

Skylar Salvevold has a condition called Turner Syndrome which only has a survival rate of 1-2%. Skylar is now 23 and thriving.

My butterfly, a nickname for Turner Syndrome girls, is a twin also. Turner Syndrome is a female chromosome disorder. My twins were boy/girl. So, all through my pregnancy it was a joke that her brother was taking all the food and that is why she was smaller. Their size difference was talked about throughout my pregnancy. Baby “A” was recognized as the big strong boy and baby “B” was always recognized as healthy, just significantly smaller. I had morning sickness all day long my first 26-plus weeks. I had lost 20 pounds in the pregnancy, so again a concern, but not a great one.

The doctor wanted to see me weekly and at a larger hospital an hour away. On week 28 they found I was having contractions during an ultrasound. So, weeks 28-29 I was allowed to be home, but it was 10 days of injecting Terbutaline into my thigh and I was on bed rest with a monitor tracking my contractions. The middle of week 29 contractions became worse and I had an ambulance ride from Willmar to Abbott Northwestern Hospital. I was hospitalized there until I delivered the twins in week 34, still six weeks early.

Twins right after delivery at Abbott Northwestern Hospital.

It was May 19, 1998. My preemies were born naturally just after midnight. Baby “A” was born weight 5 pounds. Baby “B” was born breech at 3 pounds, 13 ounces. She was diagnosed with apnea as her lungs weren’t fully developed and she needed oxygen. Both babies were jaundiced but otherwise healthy.

My son was released from the hospital after a week. My daughter was hospitalized for six weeks. She had a weight requirement to hit and needed stronger lungs before she was sent home with an apnea machine for two months after that. We had one fright with her breathing level getting too low after we were home that required an overnight at our local hospital. But otherwise, year after year and appointment after appointment, it was just always that she was so little.

Skylar on her BIRTHday.

My butterfly, also known as Skylar, was a healthy baby/child once we got her lungs developed fully. But in first grade, her teacher had a sit down with me as she believed Skylar may have ADHD. After tests and seeing the pediatrician, she was in fact diagnosed with ADHD and put on medication. A side effect to the medication is a stunt in growth. So that was always the reasoning as to why she was so little. At 16, it was once again a teacher that approached me. He was concerned with her height and the sensitive subject that she hadn’t hit puberty, as he saw that my husband and I and Skylar’s siblings are tall; and also, the comparison to Skylar’s classmates. So, I took her once again locally to our doctor, but this time the doctor set up a bone scan, which led to an appointment at Children’s Hospital that finally led us to an answer we’d been after all along.

16-year-old Skylar pictured at Children’s Hospital.

In a matter of 5 minutes, I was told my Skylar had Mosaic Turner Syndrome and that she survived my pregnancy with a survival rate of 1-2%. It was a moment where my heart stopped and I was in complete shock. All these years of wondering and being questioned by almost everyone we met and all the doctor appointments yet no significant answers. Finally, it made sense. Within those next few months she went through several tests to check her heart, kidneys, thyroid, ears and vision and female reproduction. Through her upper teen years, she was on hormone and growth therapy until she turned 18.

This topic is bigger than I can fully express or share in one article. But what I can say is, she is our miracle. And, now at 23 years old, Skylar is thriving. Her health has been good. The toughest news was that she was told she may never be able to carry her own children. So therefore, Skylar enjoys the idea of someday adopting. There is not a day that goes by that I don’t think about the mothers and fathers that have lost their butterflies. It’s a condition and topic that needs to be recognized and diagnosed earlier in these girls’ lives and then celebrated.

Sky, age 17, and I at one of her Children’s Hospital appointments in Minneapolis.

At the end of the day, my Skylar Alexis is a miracle that survived some pretty tough odds. This holiday season and always, we are blessed.

Jen Salvevold is a wife of 27 years and the mother of 23-year-old boy/girl twins and also a 20-year-old daughter. She is the owner of {Photojenic} Photography, is employed with Evolve Vacation Rentals as their Minnesota photographer, is a CNA for elderly veterans with Comfort Keepers in home care and runs an online Etsy Shop. Jen enjoys the busy lifestyle and fits in family, friends, physical fitness and crafting every chance she gets.