Imagine having a seemingly effortless love life where everything goes perfectly to plan. No terrible first dates, divorces, or tragedies. Just finding the one you love and settling down immediately.
That’s pretty much what happened to this one woman, Jamie Sandifer.
Jamie met Parks, her college sweetheart who she is married to. They dated, knowing they would get married soon after they met. Then within three years, she was pregnant.
When they found out the news, there was nothing but happiness and excitement. They couldn’t wait to tell her mother. They were so excited, they conveniently left her positive pregnancy test for her mother to find and even secretly videotaped her reaction.
Her reaction was priceless and everyone was beside themselves.
As weeks passed and they soon came to the 12-week pregnancy mark, they told more and more friends and family.
Apparently, making it out of the first trimester is huge, so she was excited and relieved to begin her second. She felt like she was “out of the woods,” and that if there were any complications, they probably would have been noted by that point.
Now she began to really enjoy her pregnancy, which felt just as effortless as her entire relationship with Parks. She gained a few pounds which didn’t bother her, took weekly photos to document the process, and had an anatomy scan at 20 weeks that confirmed the baby was healthy. Additionally, she had regular OB visits and blood tests.
Everything was going great and if anything, the pregnancy was very uneventful.
Enter her 35th week of pregnancy. That was “when it all changed,” she shared.
During her weekly visit, she was aware she had gained a little bit more weight than she was supposed to, but she was enjoying eating for two, and she wasn’t going to let her doctor lecture her about it during the home stretch.
But her belly was huge and according to the tape measure, she was 4 weeks ahead. Because of that, her doctor wanted to perform an ultrasound.
During the ultrasound, they noted short long bone (humerus and femur bones) measurements on the baby and Jamie’s fluid was almost double what it should have been. This was a sign of dwarfism or skeletal dysplasia.
Jamie and Parks left scared for the first time during the pregnancy. Her OB referred her to a maternal-fetal medicine specialist who they saw right away.
They were expecting the MFM specialist to tell them that their initial measurements were incorrect. Unfortunately, that was not the case. It was actually worse.
As the doctor read the report, she freely shared her unwanted opinions (which only came from looking at the ultrasound), which seemed to only make Jamie and her husband more and more nervous.
I am certain this is skeletal dysplasia (dwarfism) and 99% certain the result will be fatal for the baby,” the genetics counselor told the family. “You will definitely be able to tell something is wrong with the baby when it’s born,” he added.
So much for a perfect pregnancy.
Jamie’s mother who was there as well, held her hand and offered plenty of “mama bear” support.
As the three of them sat there in fear, the doctor asked his genetics counselor to tell them about the “wonderful” opportunity to have a new blood test that could help determine the type of dwarfism the baby had. Aware that the doctor was trying to just make an extra few bucks off the family, they quickly bolted.
The next day, Jamie got a referral for a different doctor who turned out to be wonderful and much more sensitive towards the family’s feelings.
He confirmed the baby would have some form of dwarfism, but was convinced it’d be much milder than what the previous doctors said.
The MFM supported their birthing plan and hospital of choice, unlike the last one, “with the added condition that [they] have a neonatal physician be present at the birth to support [her] OB in the event there were any complications.”
The couple left the appointment with restored hope.
Naturally, Jamie lost the joy during her last four weeks of pregnancy, but Parks remained extremely supportive and was her rock during the entire process.
On June 16, 2017, the baby finally arrived. At 6 pounds, 14 ounces, and a petite 18 1/4 inches long, Finley had fresh, rosy skin and was crying loudly. For her parents it was the “best day ever” and she was their “perfect baby girl.”
“After not one, but two, test results ruling out Achondroplasia (the most common form of dwarfism), a panel was completed to look for an atypical mutation of the FGFR3 gene.”
It was confirmed – Finley has a rare, atypical mutation of the FGFR3 gene and an unnamed skeletal dysplasia.
There are over 200 forms of dwarfism, and they may not ever be able to name Finley’s type.
Most importantly, the doctors are confident she will live a long and healthy life, so Jamie and Parks are ecstatic.
She also has big blue eyes and a beautiful smile!
Finley’s parents absolutely love and trust her pediatrician and she also has six-month visits with her ENT, pediatric orthopedic surgeon, and a pediatric neurosurgeon. Her genetic counselor and geneticist get a yearly visit to track her growth and take notes since her condition is so rare.
Jamie began an Instagram page for Finley to raise awareness and make it a comfortable conversation about her dwarfism. She wants Finley to grow up and be proud of it.
Her parents are working to end the stigma, and Finley “has already helped us to become better parents than we thought we could ever be!”
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