Monday, October 25, 2010

Memorial Box Monday: Doctors, Down syndrome, and deformities

I'm on the final downhill run with my pledge to post daily in October in order to raise awareness about Down syndrome. I have a friend who wondered aloud who on earth needed to be made aware of Down syndrome? She also has a child with spina bifida and felt like that condition needs much more awareness than Ds. I had to laugh...really, who doesn't know what Down syndrome is, at least to some degree? I think the purpose of Down syndrome awareness month is to bring to the forefront that what you thought you knew about people with Down syndrome might, in fact, be wrong or at the very least inadequate.

That brings us to today's post as well as back to Memorial Box Monday, the point of which is to memorialize those times when I could so clearly see God's hand in our life.

Our sweet Emma Lane (well, sweet unless she's breaking up with a pop star) was born via c-section because she was a frank breech (legs first, face up). I remember thinking that one nice effect of having a c-section baby was that the baby's head wouldn't be strangely shaped after the journey through the birth canal.

Imagine my surprise when I first glimpsed Emma as they put her in the isolette and her head was really angular in spots and not the pretty round head I had envisioned. Almost immediately, I started asking about her head shape to the doctors that we encountered over the week she remained in the hospital. Each one would sigh, their head would sag a bit to the side as they would sadly explain that nothing was wrong with her head; I was obviously just seeing the Down syndrome.

Even after we left the hospital, Emma still saw many different doctors to rule out various health problems related to Down syndrome. I would still point out the funky head shape; they would still tell me I was just seeing the syndrome.

As I waited in one of the common waiting rooms to see yet another specialist, I started to flip through some brochures from the hospital, having forgotten the immutable rule of waiting rooms: bring a book! One brochure was from the hospital's craniofacial doctors and it described exactly what I was seeing in Emma's head. Well, not exactly IN her head, maybe, but you know what I mean.

After returning home from the appointment, I trepidatiously made an appointment for Emma to see a craniofacial doctor at the hospital. When we walked back to see the doctor, the nurse escorting us bluntly said she was sure we'd need to see the surgeon next. I was appalled but decided to wait and see what the doctor said, which was that Emma had positional plagiocephaly and would need to wear a helmet for several months to correct her head shape. I was relieved, but surprised, since what I had read about positional plagiocephaly indicated that it was related to a child being put on their back too often. It wasn't usually a congenital problem and I had clearly noticed Emma's head shape from the moment she was born. The doctor brushed off my concerns and gave us information about getting fitted for a helmet.

A few days later, I was surprised to receive a call from that same nurse. In a nutshell, she had made us an appointment with the surgeon because she believed the first doctor had misdiagnosed Emma. I still find it amazing that she was basically insubordinate to that doctor in order to get our daughter better care. A few days after that, John and I found out that Emma actually had been born with craniosynostosis, a disorder that means one of the opening in her skull had fused prematurely. That meant that part of Emma's skull wasn't growing any longer and would need to be surgically released so that it, as well as the brain under it, could grow properly. Without surgery, that portion of the brain can be compromised due to pressure and can cause developmental delays.

I was stunned. The news of Down syndrome never even broke my stride but the news that my tiny daughter's skull would need surgery upset me greatly.

Due to the subpar care we had received during our time in Canada, we chose to seek medical care for Emma back in Dallas. Dallas is fortunate to have three different craniofacial surgeons of excellent repute. We can tell you about all three because we've met them.

The first wanted to wait on her surgery for longer than the commonly accepted standard. We weren't comfortable with that advice so we met surgeon #2, a man more impressed by himself than any I have ever met before. He ridiculed our faith and told us he would happily cut off part of Emma's tongue while he was reforming her skull. The third surgeon was, thankfully, the best-trained of the three and also the most humble, helpful, and honest.

In this story I see God at work and I see a need for holistic awareness of people with Down syndrome. God is easy to see. He used a nurse to keep us from a potentially harmful 'cure' and He directed us to a doctor who showed Emma (and Emma's fragile mommy) compassion and skill.

As far as the holistic awareness, I saw that with each doctor who told me that I was just seeing the Down syndrome. Ironically, they were just seeing the Down syndrome and completely missed the fact that she could have a problem outside the normal Down syndrome problems of heart, gastrointestinal tract, vision and the like. I am sitting here now shaking my head, wondering how many moms are out today seeing doctors who only look for the medical problems on the list and forget the basic humanity, with all its attendant problems, of the child.

Once again I am reminded of a quote from the book "Expecting Adam" by Martha Beck: Whoever said love is blind is dead wrong. Love is the only thing that lets us see each other with the remotest accuracy. As the mother of my beloved child, I was the only one for months who could see her as she was without being blinded by deformed perceptions of a syndrome. That, dear readers, is nothing but God.


Bulldogma said...

Bravo! We have also encountered numerous doctors who, in retrospect, seem ridiculously short-sighted as a result of their misconceptions about Down syndrome.

Thank goodness you are the champion for your daughter that you are!

Arizona mom to eight said...

Mom's just know when something is not right. I am thankful for the insubordinate nurse who helped Emma.

Heavenly sent for certain.

Leah said...

I think your friend, who wondered if there wasn't already enough awareness about DS, might be shocked at the number of people who don't know what DS is. They have no idea that there is a name for that syndrome they see on so many people walking around. My own husband, when we met 7 years ago, (Angela was 7 at the time) didn't know it was called Down syndrome, and when we would see other people out in the community with other disabilities such as Autism, would ask, "Does that person has DS?" He was still trying to get it straight. It took him a few months to put it all together. But he was not alone, there are millions of people walking around like that, not having a clue really, what DS is.

Tara said...

So true about doctors. One young pediatrician in the practice we go to always wants to put Eon in the hospital, even if he just has a cold. He seems convinced that it will always turn into pneumonia (never has) because that's what he knows about Ds. I finally told him, "You know you're not going to cure the Down syndrome, right?" and he backed off. He has just never come across (or has been too blind to see) kids with Ds who are healthy like Eon.

Anonymous said...

You know, Jill, on a much smaller, less-frightening scale, I noticed Paige's eyes were crossing before anyone else did. The first doctor did not see anything either, but Dr. Ranelle did, and the rest is history.
Thanks for reminding me of Emma's story.


Renee said...

Stopping by from Linny's ...How wonderful that God used that nurse to speak to you....What a wonderful quote by Martha Beck...beautiful...just like your children.