Kyra's Story

Kyra Nikita was born on August 1, 2004.  We had already had a 5 year old boy and were expecting an easy pregnancy and a healthy baby.  We had an ultrasound at 10 weeks and were told we had a “disappearing twin” pregnancy, meaning there were two sacks but one was already empty.  It didn’t concern us at the time because we just figured it was nature’s way of selecting the stronger baby.  Without modern technology, I wouldn’t have even known it happened.  At 26 weeks, we had a 3-D ultrasound.  My husband and I were very excited to find out the gender of the baby and were hoping for a little girl.  Sure enough, it was a girl and we couldn’t have been happier.  Everything else looked fine so we started stacking up the baby’s closet with pink frilly clothes and waited for the big day.

On July 31st, I had contractions all day.  The doctor on call wanted to stop the labor to see if we could wait a few days.  I was ready to have the baby and the next day when I called the hospital and talked to the doctor, he was ready too.  He told us to come in for a scheduled C-section.  I remember him saying as he lifted Kyra’s head out, “Where did you hide this baby?”.  I think he was surprised by the big head.  I just smiled.  I always got remarks on how I didn’t look 9 months pregnant.  Kyra was 8 lbs. 14 oz.  I was surprised because my son came 3 weeks overdue and compared to Kyra he was only 8 lbs. 9 oz.  I was expecting a baby in the mid to higher 7 lb. range.   As they put me into the recovery room, my husband came in to tell me that Kyra’s head size was at the 95 percentile and they wanted to run an X-ray.  I didn’t think much of it because my son’s head was pretty big too.  I was even joking about it.  After the X-ray they wanted to take a CT-scan.  The results were a bit confusing so the doctors and staff wanted to have Kyra and I medivaced to Anchorage for an MRI.  That’s where we were told Kyra has hydranencephaly and she has about 5, but no more than 10% of her brain.

My first thoughts were, “What did I do wrong?”.  I cried so hard.  I can’t tell the feeling when your heart is set for celebration but instead you get devastating news.  Nothing hurts more than bad news about your child.  We needed to tell my husband who was back in Juneau with my son about the news.  The doctor and I called him to give him the news.  He was devastated.  He just cried and cried saying, “My baby girl! My baby girl!”.  After Kyra was born and we figured out what was wrong with her, we made decision right then.  We would just take her home and love her for who she is for the short time the doctors told us we would have her (two months to a year).  

By her second month, Kyra was doing very well.  She could eat orally and breath very nicely, except that her head was growing at an alarming rate.  Even though we were against the shunt surgery because of the risks involved, we decided that this was going to be the best for her.  We figured that if we only had her for a couple months after that we wanted to spend all that time with her and not in the hospital.

On October 8th, she had the shunt placed in and immediately her head size went down.  She was much calmer now.  In the following months, she started to smile and laugh and became a very happy baby.  Soon after coming home from the surgery in Seattle, I found the hydranencephaly group on the web and they became my lifesavers.  I found the confidence, answers, and friends there.  I have to say that I was reluctant at first because I’d never been part of an internet group before, but I persevered.  On the Rays of Sunshine page, I tried to reach Barb, the moderator, a hundred time before but my computer was acting up and wouldn’t let me in.  This made me hesitant, but I’m glad I didn’t give up.  I don’t know what I would do without all the wonderful help I get from all of them.

Today, Kyra is well over six months old and she’s doing better than we ever thought she would.  She brings so much joy and happiness to our lives.  We are so proud of her!  She’s beautiful and has a great personality.  It took us a little practice to get to know what she likes and dislikes but that applies to all babies regardless of health.  Now, she’s just like a “normal” baby for us and we don’t see the shunt or the differences.  She knows her name and responds to our voices as we talk to her.  

Kyra can’t hold her head up, has no muscle control, and can only see bright lights. She can kick her legs and wave her arms if she’s laying on her back. She turns her head if we call her and smiles at us as we talk to her.  She knows teasing and her laugh is delightful! Recently we got a “Little Room” for her and she started to explore the toys inside.  We are working on rolling over, it’s hard because her head is still larger than it should be for her age. She has acid reflux which sometimes makes her eating episodes a little painful so we need to keep an eye on her positioning.  Sometimes she has tremors and gets agitated (she clenches things hard and shrieks) but all-in-all she is a very happy baby, especially if someone holds her. She has a hundred ways (making sounds, facial expressions) to let us know how she feels. She drinks from a bottle and just started to eat applesauce with spoon. She loves her baths and sleeps completely tucked in but doesn’t like to be alone.