Sixteen years ago, after a long and arduous labor, I gave birth to a baby girl. The odds were stacked against her from the start. My water had been broken for 10 days and because I didn’t dilate, my OB office told me I was in pre-term labor. I wasn’t and when I finally convinced them I was really in labor, it was almost a couple of weeks later, I had pre-eclampsia and my baby was in distress. I was induced and fifteen hours later, my Rosie entered the outside world with the help of a vacuum extractor. The umbilical cord was wrapped around her neck and although she was considered to be full-term at 38 weeks, she was covered with lunago and had a low apgar score.
I’ve told that story countless times to medical professionals as we’ve searched for answers about our daughter’s health. You see, our journey didn’t start with the migraines in puberty or the blob of blood she spit up in a Walmart parking lot over two years ago. It began when she was born. Rosie was sick from day one.
We had challenges from the start. She was incredibly jaundiced and was unable to breast feed. While I tried to tube feed her for a while, I finally caved and gave her a bottle and pumped for nine months. Eating was always a struggle. She’d take the bottle and then throw her tiny hands up in the air as she fed and start screaming. She also didn’t sleep. Ever. I’d take her into the basement so my husband could attempt to sleep and rock her all night. This happened every night and at five weeks when we went for a check-up, I told the doctor there was something wrong. She told me it was colic. I fought her thinking it was GERD. It wasn’t.
Sixteen years later, we’re finally getting some answers but sadly, they come with a price. Because no one ever really listened to me or attempted to put together the pieces of the puzzle, I’m 100% convinced that our daughter got sicker over time than she would have been had we been able to get help earlier. Why? She’s never been able to sleep and that makes all her symptoms worse. So while the neurologist was throwing medications at her for years for her chronic migraines, she never searched for the root cause. Once treatments started to fail, she erroneously diagnosed my teen with Amplified Pain Syndrome and we couldn’t get quality care after that at all. So, the entire time, my teen’s health declined and every time she started to get better, we’d have a crazy set back.
In August, we were fired by our neurologist for disagreeing with her plan of care. It was the best thing that could have happened to us. We quickly realized that the new neurologist was not only a brilliant guy, he actually wanted to figure out the reason behind the daily headaches. She was diagnosed with Ehlers-Danlos syndrome that first visit and he ordered a battery of tests including a sleep study (which was never ordered by our former neurologist. Our nephrologist ordered one that we were not able to complete because of a concussion. Looking back, it happened for a reason. I don’t think we would have the same outcome).
The sleep study showed that Rosie wasn’t getting enough oxygen when she sleeps. She has apnea and if we could fix the sleep issue, it would make all her other issues better because sleep impacts everything- headaches, migraines and pain. While it wouldn’t cure her EDS, it would dramatically improve her quality of life. He sent us to a surgeon to figure out if her airway was collapsing when she sleeps. Friday, we got the confirmation that it is and it was a little surprising.
Our neurologist and ENT originally thought that Rosie’s epiglottis was floppy and that they’d operate to fix the problem. She was sedated and scoped Friday prior to her Septoplasty and the results were a bit of a shock. Rosie has Laryngomalacia. Essentially, her airway is closing when she sleeps but it’s around her vocal chords. Our surgeon told us that it’s incredibly rare to see it in a teen that most cases are babies and they generally outgrow it by the time they’re 20 months old. He’ll have to refer us to another specialist for her to have an operation to fix the problem.
So, it’s an answer and a big one because it explains everything since birth. She couldn’t feed because her airway was closing and I was right, she was screaming. She was in pain. She also hasn’t had any quality sleep in sixteen years. Her airway closes and it wakes her up throughout the night. If you do any research on sleep deprivation, it can cause headaches, memory problems, high blood pressure- all of these are things that we’ve complained to doctors about in the past. Rosie’s daily headache and complaints about brain fog may not be caused solely by her POTS. It may be because she can’t sleep and is oxygen deprived.
Our surgeon has placed a call to a specialist at another hospital to figure out where to send us and we’ll discuss that with him at our follow-up appointment on the 20th. I can’t begin to express how happy I am to finally have people who not only want to help us, but care enough to steer us in the right direction and help us find solutions. My poor teen has had enough medications thrown at her the past few years. Now, that we’re getting answers it’s time for her to get some relief and get her life back.