You’re sitting in a hospital room, with a newborn baby and your 7-year-old baby. You are in a foreign country, your husband is at work and you have no family nearby. The doctor tells you that your child needs an MRI of her brain immediately.
Tears roll down your face.
You have no one to talk to.
You feel alone.
To some, this is what nightmares are made of. But for me, it was reality and it was only beginning.
This all started when she passed out while getting ready for school one morning. For several days, my daughter went through two different MRIs. Tons of blood work. EEGs twice a day. Every medical test you could think of, she had it done.
When one of the MRIs showed abnormalities with her brain, but no obvious cause, the doctors went with the next step of genetic testing. Waiting for 12 weeks for those results was the longest 12 weeks of our lives.
Once the genetic tests came back, it was determined our daughter has Megalencephaly-capillary malformation syndrome or MCAP.
Little did we know, that this was far from over when it came to getting the medical care she needed. We decided we should come back to the States on a compassionate reassignment, to make sure our daughter was taken care of medically.
Most days, I feel like it was the worst decision we ever made. Other days, I try to tell myself it was a blessing in disguise because my husband was able to reclass to a new MOS that he loves and makes him happy.
Fast forward to now, 5 years later.
She was diagnosed with scoliosis and will need hip reconstruction surgery. Last year, she had to have knee reconstruction, due to her knee cap frequently dislocating. MCAP causes extremely flexible joints, so this came as no surprise to the orthopedic surgeon. Just recently, I had to walk through fire to get her another referral for more orthopedic consults.
When her pediatrician at our current military treatment facility saw her X-rays, he told us there was no need for a referral and that we only needed to follow up once a year. WRONG.
As mothers, we know when something isn’t right.
No, I did not go to medical school. But I am a mother with a gut feeling that is never wrong. I fought for days to get the referral to the orthopedic clinic.
When we finally got in after waiting for 3 weeks, they were amazed that the pediatrician did not take her X-rays more seriously. One of her hips sits much lower than the other and the orthopedic physician said that is a major concern, which may require hip reconstruction. They ordered more X-rays and asked us to get a follow-up appointment. The next available was 3 weeks later.
The waiting is agonizing.
I fought to get her the referral. We waited for an hour in the waiting room to be called back, before being informed her doctor was stuck in surgery so we could either reschedule or see someone who isn’t her doctor. We opted to see someone who wasn’t her doctor, so we could get some answers. Now we are waiting again, to hopefully see her usual orthopedic doctor.
It’s true what they say -- military life is nothing but hurry up and wait.
Waiting on referrals.
Waiting for over an hour in the waiting room before you are finally called back.
Waiting to hear test results, only to never be called back or completely ignored.
Waiting to know if your child will go through another traumatic event, such as reconstruction surgery. The pain. The tears.
The awful feeling that you feel like it’s your fault. Did I take the wrong prenatal vitamins when I was pregnant that caused this? Did I have too much stress during my pregnancy and it caused MCAP to develop? Was it my genes that caused her to have to go through this?
The constant fear of feeling like it’s my fault and the guilt are soul-crushing.
For the record, I was assured by the genetic doctor that this was just a random mutation of genes, that had nothing to do with me. But, it’s hard to accept that at times.
When you add all of these things together, it’s hard to get through the days sometimes without feeling like you can never do anything right.
I try to make sure she always has access to the care she needs, but it feels impossible sometimes. Some doctors seem to blow us off at times.
The Exceptional Family Member Program (EFMP) is supposed to be a system that ensures you will have the care you need at every duty station you are assigned to, but to some of us, it sure doesn’t feel like we have the care or even the compassion that our children or other EFMP family members need and deserve.
Our daughter’s disorder is so rare, that not many doctors at our military treatment facility (MTF) even know what it is. I remember an appointment with a doctor who had never seen her before. I took her in for something routine and when I was asked about her previous medical history, I explained to them she has MCAP. They looked at me like I had 2 heads.
It’s just as frustrating having to explain every time we see someone new at our MTF what she has, what causes it, what the symptoms are, etc, as it is also frustrating waiting on referrals.
Three weeks for a wait here and there may not seem like much to some or even most people. But it’s an eternity when you’re in our shoes and going through what we have to go through.
Doctors who don’t listen.
Doctors who KNOW your child has a certain medical disorder like MCAP, yet they either know very little about it and refuse to learn more, or they refuse to listen to your concerns, simply because you are not the doctor, therefore, you obviously don’t know what you’re talking about.
I’m not writing this to gain sympathy. I’m writing this so people know that the system is truly broken.
We hear this time and time again, from other family members who have to walk through fire to get what they need.
As a mother, there is nothing worse than seeing your child struggle. As a mother, it is my job to protect her and make sure she is provided with what she needs, which includes access to care.
I feel like I’m failing at every turn, because the system, and lack of care and compassion on the part of some physicians, won’t let me have an opinion. I know more about my daughter and her health needs after the whirlwind of the last 5 years, over a physician who has looked at her all of 30 seconds.
It seems to be a typical response of, “Oh, her knee and back are hurting? Just give her some Motrin.”
Things need to be changed.
Will they change? Most likely not, but we can still talk about what we have had to deal with to hopefully help another military family find comfort in knowing they are not alone.
Maybe someday, there will be more thought put into how to help our children and family members who have had more than their fair share of struggles with the military health system.
Motrin and hurry up and wait are not getting us where we need to be and our children and other special needs families deserve better.
Jana Wanner is a happy wife and mom. She has a wonderful husband, two great kids, a Great Dane and two kitties. She is a stay at home mom who loves writing, reading, baking and wine. She currently lives at Fort Gordon with her family, and is hoping the PCS Gods send them somewhere cold next!
This article originally appeared at NextGen Military Spouse.
More articles from NetGen Military Spouse:
• Living The Special Needs Life, MilSpouse Style
• PCSing with an EFMP family member
• Myths and Facts About Pursuing a Diagnosis for Kids
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