Vani
Rose McGhee
May 25, 2000 – May 28, 2004
May 25th, 2000 was a great day for our family and what I would have
thought should have been a great day for my niece, but it turned out to
be a very disturbing day for all of us.. A baby girl was born at 11:30,
not breathing and many other complications. My niece had gone into labor
and delivered a very sick premature baby girl. With all the complications
that were brought about with this birth not only was she sick, but abandoned
by her biological mother one week after her birth. Not knowing that after
2 weeks in the Pediatric Intensive Care Unit this beautiful little girl
would go home with me her great aunt and the only thing she would have
from her biological mother was her name Vani Rose.
After getting Vani home, with the help of my sister Jean, my nieces
Karla and Marla, rushing around trying to get things to fit this tiny
little one that had come into our lives, Vani took off like a rocket.
She grew, and seemed very healthy to me. I noticed at 6 months old, when
my grandson came to visit us for the Christmas Holiday in Georgia that
there were things he was doing at 1 month that Vani had not done at 6
months. John and Vani are 6 months apart in age. John was born in November
2000. I noticed that John was lifting his head and looking around and
Vani was not. I spoke with my husband and other family members and they
told me that I really needed to seek help for her, something was not right.
After much praying and fasting, I took her to her Pediatrician and he
too noticed that Vani was as he called it delayed. I was then referred
to a Neurologist. But prior to that time Vani had started with constipation
that could hardly be managed without taking medication daily, she also
had to have a G-tube inserted for GERD. With all that was going on with
her I thought Lord, please nothing else, this baby has had it.
I took Vani to the Neurologist, he told me that it seemed that my baby
had Cerebral Palsy, and with further testing they could give me final
results. Many months passed, Vani was taking Physical Therapy, Hippo Therapy,
Aqua Therapy and Speech Therapy, but I could not see any improvement.
On May 29 2002, I was given full custody of Vani by the Fulton County
State Court, Vani was mine all mine. She continued her therapy, but there
was no progress and there was no regression things were just the same.
We decided that, Vani her sister Kitty and I would make a new start in
California, so we came to California and we were off to what I thought
was a good start. I got her started with a Regional Facility and from
there therapy groups and school... Vani her nurse Kim who by the way was
the only one that could get a sassy reaction from her and Errol and I
were taking her for a Doctors visit at the therapy session. The doctor
noticed that she had repetitive clapping her hands and sometimes ringing
her hands, she asked how long had she been doing that, and I told her
for at least a year maybe longer, she asked had Vani been tested for Rett
Syndrome, and I asked what?? I had never heard of it. She told me that
she felt that Vani might have Rett Syndrome and she felt that it would
be in our best interest to have the test done right away. So she made
arrangements for us to go to Cedar Sani Hospital Genetics, Dr,. Graham
and there the blood was drawn and off for testing her blood went.
After reading about Rett Syndrome, I prayed that Vani did not have that;
we could deal with CP but nothing more. September 11, 2003 Vani‘s
results came back, Dr. Graham called my husband and I and told us to come
to the office, bring Vani off we went. We were taken to this office with
this huge table, lots of Resident doctors were coming in and finally Dr.
Graham and his assistant Dawn came in and told us the news, “Pam
Vani tested positive for Rett Syndrome”, I can remember dropping
my head and crying, I looked at my husband and he was also in tears. How
depressing that news was to me. He asked if they could film Vani’s
continuous hand movements and I agreed, Why not, if it could help the
medical field find out more information, then maybe they could find a
cure. We came home our hearts were heavy as lead, but we both managed
to laugh and play with Vani, I made up in my mind that day, that I would
never give up on her, I would fight in any way that I could to help my
baby overcome this.
Two months after the diagnoses Vani started having seizures, they started
off as being short ones, but then as time progressed, they lasted longer
and longer. Vani was hospitalized 6 times in a period of 3 months for
seizure activity. Medication that she was given would help them but they
never stopped. By March my poor baby was looking so tired, she was seizing
everyday 5 -6 times a day and at night. Her Neurologist was trying everything
that he knew and nothing was working. May 17th Vani started off that morning
with a very high fever that would not go down, I finally decided that
this is not working; I called her doctor he told me to take her to the
Emergency Room.
On the way she was playful and happy. But when we got there the fever
was still high and we started noticing her having some seizure activity,
they thought it best to hospitalize her. She was given medication for
her seizures that normally made her sleepy, before she went to sleep,
she looked at me with those beautiful brown eyes and gave me the biggest
smile you could ever imagine, not knowing at the time it would be the
last time I would see, her beautiful eyes, and see such a loving smile.
They preformed a 24 hour EEG’s on Vani to measure the seizure activity,
not only was she seizing during the day but in her sleep as well. Tuesday,
May 18th her Neurologist informed me that Vani had slipped into a coma
and that she would probably come out of it in a few days. Her brain never
stopped seizing, by Sunday we were told that she will never come out of
the coma, Rett Syndrome had taken over and we needed to make decisions
about life support.
After talking it over with my husband, my children, and God, we all
felt that Vani had suffered enough, I asked for more test and all the
testing they did still proved that her brain activity was gone. We celebrated
Vani’s birthday in the PICU on the 25th, I brought her home on Wednesday
26th and on Friday at 7PM my beautiful baby went home to be with the Lord.
I still hear the nurses’ voice from hospice telling me that Pam
Vani no longer needs the oxygen she has stopped breathing. There was my
beautiful baby in my daughters’ arms dead. My son-in-law grabbed
me,all I could think about was my baby I can hear him telling me over
and over again Mom you must be strong. I adored him because he and my
daughter were there during the worse times with Vani. As I looked at each
of my children Tony, Kim, Brandon, Demi,Kitty, the grand’s, Brianna,
Allan, Cody John all I could see was hurt and disbelief. I could hear
my husband telling me Honey,Vani is all right now, she is with Jesus,
but in my heart I wanted her back, I could not believe that my life in
a moment had changed forever. From that day to this my heart has not stopped
aching and I don’t think it ever will.
The nurse from Hospice was contacted, and she made all of the arrangements
for Vani’s body to be picked up. It gave all of us a chance to hold
her for the last time. I held her and rubbed her little fat cheeks and
I told her as I always had told her how much she was loved and how much
I was going to miss her. But now she is a whole little girl, just as it
should be. She was with a great entourage of people, My Mom, Dad, she
had a couple of uncles, and another baby cousin Mandy, who was going to
show her around. Everyone in the house held her and said goodbye in their
own ways. A time none of us will ever forget.
I made a promise to Vani while we were sitting by her bedside one morning
in the PICU; I told her that I would work until my dying day to do whatever
it takes to help raise the money for the research for Rett. My baby did
not have an opportunity to walk, talk, or do other things little girls
do, but I know that she is whole now, she can do all of those things and
she has no memory of the suffering here on earth. My greatest joys were
having that little one come into my life with such love, and knowing that
one day I will be with her again in heaven. I look at the mountains that
surround our home and I sometimes tell her Vani I can feel you skipping
from mountain peak to mountain peak, and jumping from cloud to cloud.
I want to thank my husband Errol, I love you and you will always have
a special place in my heart, because you accepted my 2 daughters with
disabilities in your life and home, thanks for all those sleepless nights’
hospital stays but most of all thanks for loving Vani. I want to thank
my children Brandon and Demi, for all those nights at the hospital and
prayers Demi thanks for the wonderful Princess Comforter that you took
time to hand make, that is with her now in heaven. Kim and Tony for the
days of running down the hall way at home, to check Apnea monitors, arousing
Vani when she would stop breathing or she had held her breath too long
and was not breathing normally, hospital visits and lots of love. Joe,
Thomas, and Gabby, for all your love and support and prayers, thanks for
accepting my baby and into your lives as family..
My Grandchildren:, Kitty,John, Brianna, Allan, Cody, Aurelio, Brenden
My Brother-in law Gary and his wife Jennifer for your continuous prayers
and support My family in Mexico Elana and Arnold, my San Jose Family the
Calderon’s, Ms. Shirley for the baths and feedings that you so lovingly
gave prayers and support. , My Atlanta family. Vanis’ Nurse Mrs
Kim and her husband Dino who are more than just a nurse you are family
Kim and Dino, Vani and I will always love you. These people were there
for Vani and I through it all and I will never forget the sacrifices that
were made to make Vani and I feel loved.
Pamela McGhee Fitzgerald
Vani’s Great Aunt
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