Haley

 

 

 

 

 

Haley was born October 25, 2000.  Haley was conceived by IVF-ICSI and had pre-implantation DNA testing prior to embryo transfer.  This allowed us to "see" all the embryo's DNA prior to getting pregnant.  Because of advanced age, and because we could, we chose to take a look, pick the "healthy" embryo, and a girl! 

Since the embryo was tested and negative for the usual concerns, Downs, Spina Bifida, etc....I had a very worry-free pregnancy and did not undergo the usual testing, as it was done prior to implantation.  My pregnancy was non-eventful (as a pregnancy can be), aside from getting bigger than when I had my first 2 children.

Haley was born on October 25, 2000 without complication.  She was almost 3 weeks early and weighed 8 lbs. 14 oz. which was large for my babies!  Her brothers both weighed 7 lb. 5 oz. at term.  The first thing I noticed was Haley's larger size tongue, I mentioned it to the Dr. and he dismissed it as "just generous, not large."  I did have an excess amount of amniotic fluid which is common to BWS.

The first day or two, Haley was the calmest baby and slept 5 hours at a time!  She never really cried for food or when awake, just pain.  So, I just figured I had a very pleasant child.  Then, on the 2nd evening, the night before we were to come home, the nurses brought Haley to me and said that they could not console her, 3 nurses tried.  I was a bit upset because I thought they were nuts, Haley was so easy. 

I was a bit uncomfortable the next day about Haley's behavior, so I procrastinated on our departure.  She did something I thought was strange, she was shivering and looked like she was gagging.  I asked a nurse about it, and she dismissed it and handed Haley back to me.  I was still very uncomfortable about leaving, so I waited a couple of hours, then asked another nurse to look again at Haley's behavior prior to our getting in the car to go home.  She took one look at Haley and rushed her off to the nursery.  They tested her blood and her glucose was "7".  Haley was having hypoglycemic seizures and they took her to the NICU for a spinal tap.

Haley was in the NICU for 2 weeks while they tried to find out what caused her glucose drop.  She never had another episode of hypoglycemia after the first event.  They could not diagnose her, her first BWS test was negative and so was everything else.  The doctors all believed she did NOT have BWS since her physical presentation was so mild.  She did not have ear pits, she was only slightly large, with a slightly large tongue.  Haley was slipping away with every day.  They had her on so much medication for seizures that she never woke up on her own.  Her muscle tone was deteriorating and no one knew why. 


Eventually, a very esoteric test was done and confirmed BWS.  Just prior, they did a starvation challenge and Haley passed and went 21 hours without food, without her sugar dropping.  Because of this, they took her off the meds for seizures and she had a few more wakeful periods........but not much.

Haley came home and improved every day.  Now, Haley is 2 years old......a beautiful sunny, sweet little girl.  She walked late, 18 1/2 months, but hasn't stopped running since.  At 18 months, she had tongue reduction surgery, her only surgery, to improve the malformation of her lower jaw.  She eats, drinks, talks and has a great time with her 2 big brothers. 

AND THAT................IS HALEY'S STORY.

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this page last modified: Tuesday March 27, 2007

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