Tuesday, November 21, 2006

Before the Blog

People on the microtia board have been sharing their stories and I finally got around to posting ours. Thought I would also add it here for posterity's sake.

I had a perfect early pregnancy (when the ear is formed). I did everything I was supposed to and there were no complications. I had pregnancy induced hypertension and was on bedrest for the last month, but that obviously did not cause the microtia. Ultrasounds were good. I had the same technician for my second son, and she seemed embarassed that she hadn't noticed the ear, but also noted that they don't usually look at ears, unless asked to.

The doctor decided to induce me at 38 weeks, since my bp was so elevated. They started the induction late at night and I slept some and woke up at about 4:30 am with contractions. Unfortunately, I also woke up with one of the worst colds of my life and had a 102 degree fever the entire time I was in labor.

Much later in the day, I pushed for about 2 1/2 - 3 hours, when the doctor decided that he just wasn't going to come out and we needed to do a c-section. I had to wait an hour for the operating room--not fun when you're in full labor--even with an epidural! When they took Miles out, they cleaned him up quickly and then a nurse sort of thrust him in my face and said, "It's a boy. There's something wrong with his ear." It was so amazingly insensitive and I wish I had later written to the hospital to let them know how they could handle such situations in a more compassionate way. They whisked him away and I didn't see him again for several hours, when they let me in to touch his foot. They had him under an oxygen tank. I didn't hold him until 4 or 5 hours after he was born.

The really frustrating thing is that when I had my second son, the OB's nurse said, "Oh, I see your first son had a perfect Apgar score." Now why would he need oxygen for 4-5 hours if his apgar was perfect? I think they just freaked out over his ear and didn't know what to do. I'm still angry about it.

The next day, our pediatrician told us that Miles had microtia, which I, of course, had never heard of. He also told us that he thought the ear could be "fixed" with one surgery in about a year. I am also angry that he "guessed" and gave us this kind of misinformation. I was very upset when we eventually visited an ENT and she told us that if we chose to do something, it would have to wait until he was 5 or 6 and it would take 3-4 surgeries (she never mentioned medpor).

The hospital did a newborn hearing test and of course he failed it for his microtic ear. The hospital audiologist seemed schocked that we weren't surprised, LOL. I will say that our state has a great follow up program for newborns that fail their hearing test. They directed us to resources and checked in with us to make sure we weren't ignoring it.

I had very bad post partum depression and I think some of it was due to lack of sleep, recovery from illness and a c-section, lots of problems with breastfeeding, and concern over his microtia.

I pretty much put the microtia out of my conscious mind until we saw an ENT when Miles was about 6-8 weeks. There we received more information and I remember breaking down and crying when we left, because I finally needed to mentally deal with it. I then did tons of internet research, reading everything I could find, including every message on this board, which was the absolute best resource out there. When we did a follow up with the ENT, I had many questions for her. She then proceeded to write a letter to my pediatrician, implying that I was a hysterical mother due to doing research. Argh... She did order cervical spine xrays to check for Goldenhar and an ultrasound of his kidneys.

We really didn't know where to go from there, but I later met a woman at work whose son had Goldenhar, but not microtia. She recommended a local plastic surgeon, who we met with and referred us to a "craniofacial clinic," where we met with many doctors and specialists. It was a complete waste of time and a big disappointment. We were given information we knew was incorrect, like canalplasty should be done before rib graft. The aforementioned plastic surgeon who had previously told us Miles would not need jaw surgery, told us, when he was with his group of plastic surgeons, that he would definitely need it. We then went to a room of orthodontists who told us he would not need it. They really didn't seem like they had a clue what they were doing.

Meanwhile, we started Early Intervention when Miles was about a year old. He automatically qualified due to his hearing los. Our county's services were wonderful. They provided weekly speech therapy (which we eventually reduced to biweekly and then monthly) and paid for Gymboree classes. We loved our speech therapist and got so much from it. EI ended when Miles turned 3 and by that time, he was actually quite advanced for his age verbally. I think some was due to him and the fact that he's so dang smart, but I also have to give credit to EI.

We contacted a number of doctors who were recommended by people on the microtia board for reconstruction and had pretty much decided we would go the rib graft route with Dr. Brent. I then met Cathy, who was also on that group and is from our area. At the initial meeting, she was also planning on going with Dr. Brent. A few months later she informed me that they had changed plans and were going with Dr. Reinisch. I didn't know much about medpor, so she met me for lunch and told me about her conversations with him and shared a powerpoint presentation CD that he had sent her.

I was very intrigued by the pictures I saw and contacted Dr. R., who immediately set up a time to talk by phone. We weren't sure we would go with him, until we saw Cathy's son's ear after the first surgery. We were very impressed with it and our conversations with Dr. R. and made our final decision when we found out (via a CT scan) that he was not a candidate for atresia repair.

I still really wasn't sure and questioned our decision right up until the day before surgery, when we finally met Dr. R. in person. I always had it in my head that we could pull out at any time and I was this close. I remember calling Cathy in a panic a week before the surgery, really doubting myself, and she assured me it was normal, LOL. While we waited for our surgery appointment date, we did tons more research on the other options: rib graft, prosthetics, and just waiting to leave the decision up to him.

When we met Dr. R. I felt so reassured. The surgeries were very stressful, but we are very happy with the results. The rest of the story is here on our blog.


alin said...

hi, i have wonderful pregnancy. it means everyday is business as usual. despite of his bilateral microtia, my son is beautiful. thank you for sharing your experience. now my plan is clearer if i want my son to have his ear fixed.

Miles' parents said...

Thanks for the kind words, Alin, and best of luck to you and your family.

Colleen said...

Thanks for sharing your story! My 14 month-old son has RMA and I find the stories of other families such a comfort. I just wanted to share that we too had a horrible experience when our son was born due to lack of knowledge in the medical community in which we lived. We never even heard the words Microtia or Atresia until our son was nearly a year old. Something needs to be done to educate hospitals regarding this condition and the support and information that is readily available to parents if they would only share it with them.

By the way, Miles is adorable!

Best Regards,
Colleen (mom to Connor - 14 months, RMA)