Tuesday, November 23, 2010

Georgia Turns Eight



Georgia is now officially eight and she couldn't be happier.  It's hard to believe that it was eight years ago this week, that Georgia was born.  She was the tiniest of my three babies (although we didn't know that at the time), she had a full head of black hair and she was happy and alert from the moment she was born.  Georgia was so beautiful and perfect in every way and we loved her instantly. 

Ten minutes after she was born, doctors informed us that Georgia would never walk. 

Georgia was born with Amniotic Band Syndrome which manifested itself as one constriction band wrapped tightly around her right ankle.  Gordy was the first person to notice it after she was born and it was he who pointed it out to my doctor.  The nurses thought it was just an indent from where her legs were pressed together during the birth - like a mark around your ankle when your socks are too tight.  I guess my OB didn't agree because within seconds a team of neonatologists had swarmed into the room and were inspecting my perfect little baby from head to toe. 

I don't think Gordy and I will EVER forget the voice of the doctor who told us in a proper British accent "This child will never walk," because he said it so casually.  (In fact, now that I think about it, his whole attitude reminds me of the first periodontist I saw who told me about my need for skin grafts - no wonder I didn't like that dentist!)  Gordy accompanied the doctors up to the NICU with Georgia so that they could x-ray her leg and run some tests.  I remained in the recovery room thinking about everything that had just happened.  Gordy and I were both terrified but I was also oddly calm.  Henry was attending a local playgroup at that time, and I was picturing how I would have to bring Georgia there in a wheelchair when she turned two.  I distinctly remember thinking that we would never see her run around our backyard or play on the playground.  I wasn't necessarily sad about these facts;  I was mostly thinking about them in a matter-of-fact way.  I had already decided that Georgia was perfect and nothing I could imagine could change my mind. 

Gordy and Georgia returned a half-hour later.  They were accompanied by a Russian nurse who had a very no-nonsense type of personality.  Gordy walked into the room looking as stressed as you can imagine.  He had just spent 30 minutes, alone, in a NICU watching his newborn child being poked and prodded by a team of specialists.  He had spent 30 minutes feeling pretty helpless and no doubt his mind had gone where my endorphin-filled, post-birth brain could not.  He needed to tell all this to me and to explain what the doctors had decided and I was eager to hear him.  He began at the beginning, "they brought her upstairs and took x-rays of her leg...."  The words were pouring out the him, but I guess the Russian nurse thought he wasn't getting to the point quickly enough for her liking.  "She's totally fine!" she interrupted.  "There's nothing wrong!"  She looked triumphantly at me as if I should thank her for cutting to the chase.  Poor Gordy, he needed to tell his story and I really needed to hear it and this nurse totally ruined it all.  We managed to lose her after she attempted to kidnap our baby (okay... she left the room without going through the whole number / id procedure, but it felt like kidnapping to us) and Gordy was able to tell me the entire diagnosis.

The band was tightly wound around the Georgia's ankle, but the muscle, tendons, and bones were all formed and Georgia was moving her toes.  She would need surgery to remove the band at some point, but the doctors had decided that she was going to be fine.  Amniotic Band Syndrome can be really severe.  Many children born with ABS are missing entire limbs and / or have cleft palates or other physical problems.  Georgia was extremely lucky.

Georgia was born in a teaching hospital - all three of my children were - and word spread quickly that a baby with Amniotic Band Syndrome was born there.  Doctors, medical students, nurses, nursing students, cafeteria workers (okay, maybe they stayed away, but it didn't feel like it) all arrived to check her out.  Most did it under the guise of education, pretending that their resident had insisted that they come in and would we mind if they took a look?  I didn't, at first, but Georgia certainly did.  After the first 24 hours, I got tired of listening to her whimper in protest every time a doctor removed her clothes to look at her leg and I started denying them all access to her.  But in addition to the students, we saw many, many specialists - plastic surgeons, orthopedic surgeons, pediatricians, NICU doctors - and they all offered their opinions on what needed to be done in the future.  Gordy and I felt very fortunate that we had chosen to give birth to Georgia in the city as opposed to our small town hospital.  It felt comforting to have so many experts at our disposal.

The first night at the hospital, the nurse on duty told me that it was okay if I wanted to cry.  She said that it is often overwhelming to have a child with a disability and that I shouldn't feel like I couldn't grieve.  I'm not kidding when I tell you that I thought this woman was clinically insane.  I couldn't understand why people were acting like Georgia wasn't the most amazing, the most perfect child ever born in their hospital.  Why on earth would anyone CRY about having this wonderful child?   I still don't know.  Not only was she sweet and gorgeous, but we had all agreed that she was extremely lucky! 

Over the years, Georgia has proven that British NICU doctor to be right - she never walks.  She's way too busy running, skipping, dancing, and playing to do anything so mundane as walking.  Gordy says that they should have told us that she would never sit.  Things weren't as easy as the doctors originally thought, though.  Georgia had a surgery when she was 6 months old to remove the constriction band but then she had to have another surgery last year to lengthen her muscle and tendon (a heel-cord lengthening procedure) so that she could rest her heel on the ground and walk more easily.  The orthopedic surgeons think she may need a third procedure at some point since her two legs are not the same length, but we'll face whatever happens together.

In the meantime, Georgia will continue to do what she does best:  soccer, lacrosse, ballet, yoga, swimming, bicycling, scootering.....  She will continue to live life with a smile on her face and a spring in her imperfect step.  And we will continue to adore her!

Happy Birthday, Georgia!











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