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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. |