A G R A N D M O T H E R 'S S TO R
Y
My story begins with a phone call from Jersey Shore Medical Center.
"Hello, we have your daughter-in-law here. She asked us to call. She came
in complaining of pain. 
We did an ultrasound and found there's
something wrong with the baby's heart. We won't know how serious until the baby is
born. The ultrasound also shows that she has very little amniotic fluid left, so
labor will have to be induced. A neonatal team will be called in, because even
though Miss Sands (the baby's mother) says she is full term, the ultrasound shows 31 weeks
gestation. Miss Sands had no prenatal care, so we have no prior records to go
by. Any number of complications can arise at birth."
I couldn't believe what I was hearing. The baby's mother told me that she's been
seeing a doctor faithfully and that everything was fine. I was so angry, but
realized now was not the time. I asked the doctor, "will the baby
make it?" He said I would have to speak to the cardiologist. I
said, "my son and I are on our way."
It took us 6 hours to get to the hospital. The whole time I
kept thinking if the baby doesn't make it, how will I be able to comfort my son -- who
kept saying there was nothing wrong. My son, even thought he acted tough and strong,
was hanging by a thread.
When we got to the hospital, the medicine to induce labor did not work. The baby
wasn't receiving enough oxygen. I spoke to the cardiologist, who said that the only
thing they can be sure of is an Aortic Stenosis. A pediatric surgical team was
called in for possible surgery. I went outside and cried and prayed to God
Almighty. I asked him to please save my granddaughter and, if not, to give me the
strength I would need to deal with it and comfort my son. Cesarean had to be done
and the baby survived the birth. The cardiologist came in and told us things were
worse than expected. The right ventricle was larger then the left. The lungs,
of course, were too small, so the baby was on a respirator. One aortic valve was too
small and, of course, the stenosis. The baby was stable, but would have to be
transferred to Beth Israel for surgery -- for they were not equipped there for the type of
surgery she would need.
Being that her birth weight was low, the surgery was that much more risky, though
necessary. My heart sank. We were allowed to spend a little time with the baby
before the transport. In spite of tubes and IV's, she was the most beautiful baby in
the whole world to me. They asked my son if he had a name for the baby and he said,
"yes, Athyna (pronounced A-THEE-NA)."
When the baby was transported, I called everyone in my family and friends and asked them
all to say a prayer for the baby, so that she can survive the surgery. That night,
no one was allowed to transport with the baby. We would have to wait till the
morning, when the trains started running again. All night I prayed that she would
survive the night. I prayed that if it was her time, that I can get there so that
she could know that she was very much loved and not alone. I prayed that I would get
there before the surgery so that I could at least touch her and transfer all my love, all
my energy and all my strength to her to sustain her. I prayed that I would make it
in time.
When morning came, the hospital called and told us that they weren't sure if they could do
the surgery, so they might transfer Athyna to Children's Hospital in Pennsylvania. I
decided I wasn't going to wait any longer, so I left, on my way to Beth Israel. I
made up my mind that there would be no way in hell that they would transport Athyna
without me. I didn't know how I would persuade them to let me go with her but I
would. The ride there seemed to take forever. Finally, I arrived. As I
was going up to the neonatal unit, I was so afraid anything could have happened while I
was enroute there. I asked to see Baby Sands. The doctor asked me who I was
and I said "I'm Baby Sands' grandmother. How is she?" She said,
"before you see the baby we need to talk." My heart sank -- I feared the
worst. She said, "it seems that things are not as they appear to
be." I asked, "is that good or bad"? She said,
"good. She does have a heart problem. It's just not as serious as we
thought, though we feel she will still need surgery. It won't be now."
I couldn't believe it. She was breathing on her own. The doctor said it
could be that since there was no fluid, the baby couldn't progress. She needed to be
born in order to finish growing and thriving.
"Can I see her?" When the nurse took me to her, I
couldn't believe it. All she had was one I.V. She was wide awake and
alert. It was amazing. It was a miracle. She was in an incubator.
To be able to touch her, I had to put my hands through 2 openings that it had on the
front. I reached in and took her little hand. With tears in my eyes, I told
her that I loved her and made a promise that I would always be there. She squeezed
my finger and just stared up at me as if she understood. At that moment, I knew that
a bond was made that would never be broken.
I called everyone and told them what happened. They all agreed that God was with her
and a miracle had happened. The doctor decided that the baby could be transported
back to Jersey Shore to be with her mom. That's when I went back home to Yonkers to
get everything ready for Athyna's arrival. I had spoken to all the pertaining
parties and it was decided that the mother and the baby would come to my home when
released from the hospital.
Athyna stayed in the hospital for 10 days. During that stay, I
kept in touch with the baby's mother. The hospital decided to test Athyna for Down's
Syndrome. The results would have to be back before Athyna's release. The test came
back normal, yet Athyna was still not released. Every day was a different
story. Finally, Athyna's mom told me that the hospital was not going to release the
baby until she showed an interest in caring for the baby and CPS would be called.
Again, I couldn't believe what I was hearing. How could all of a sudden they decide
something like that? I called the hospital. At first, they would not speak to
me. When I told them that I spoke to Miss Sands, and that I just wanted to know what
was going on they explained to me that the mother just didn't know how to take care
of the baby and didn't show any interest in learning how to, either. They explained
that, medically, the baby was fine and ready to be released, but they felt that the baby
would not thrive under her mother's care and they saw no sign of family support -- in
spite of Miss Sands having her family there in New Jersey. I explained that I
understood and completely agreed, but I begged them to release the baby to me -- that I
would bring her to New York and be Athyna's primary care provider and that I would help
the mother and teach her. I told them that I had already set up an appointment for
the baby to be seen the day after her release. They agreed, but said that I had to
go pick her up -- as they would not release the baby to Miss Sands without my
presence. I agreed. To say that I was angry with the mother would be an
understatement, but my main concern was getting the baby.
When I got there, I couldn't believe they were releasing Athyna. She was so jaundiced (yellow). I asked if that was ok. They said it will go away, yet, she was so small and looked ill. On the way home, I was so afraid she would stop breathing or something, but she made it home ok. I took her to the doctor the next day. They said she was ok and to bring her back in 3 days to see the cardiologist. When I returned, they made an appointment for 1 month later. They didn't even see the baby. I took her to the pediatrician I used for my kids when they were little. She sent the baby to the ER. Athyna was breathing fast and shallow and her lips were blue. At the ER, they gave her oxygen and ran tests. She was released -- with an appointment to the cardiologist in 2 days.
The cardiologist found that the baby has Pulmonary Valve Stenosis. She would eventually need surgery, but not now. She would need to be seen periodically.
He pulled me over to the side and told me that he had called a
geneticist and would like for me to make an appointment. I asked why. He said
her features were a little off -- it could be nothing, but it was best to check. I
told him that genetic testing was done in New Jersey and nothing was found. He said
that the geneticist here could see the baby and call over there to see what tests were
taken -- that it wouldn't hurt. I agreed, but, in my mind I wasn't worried. The
appointment was in 2 1/2 weeks.
In those 2 1/2 weeks, Athyna was in and out of the ER every other day. Some of
the time was from neglect from the mother, but other times we just didn't know what was
wrong. She'd cry and wouldn't eat. She wouldn't sleep and I was so afraid her
heart would give out. She finally would eat 1-2 oz. every 2-3hrs. She was
colicky, so you can imagine how my nights without sleep were. The only thing that
seemed to calm Athyna, was me singing to her. I found a song from 'NSync that
expressed exactly how I feel, and recorded it and made it my song to her. It's still
the only song to date that can calm her down.
The day came to see the geneticist. His secretary told us to wait -- that the
genetic tests that were taken in New Jersey were being faxed to the doctor. Once he
received them, he would see us. I didn't mind waiting. I just knew he would
find nothing wrong. He showed us the test that was taken in New Jersey and explained
that the test showed the right amount of chromosomes ruling out Down's Syndrome, but that
there was a test called the FISH test, which tested each individual chromosome for a
deficiency. He said he was looking for 2 types of syndromes. The first one he
mentioned was so long it didn't register, but the second was easy -- William's
Syndrome. It didn't register that it was a disorder. My head registered a
disease, so I asked if it could be treated. The Doctor said that until the results
came in it would be a moot point to discuss it since the test may show nothing. I said
alright and an appointment was made for 2 wks. from then. But, the doctor's response
didn't sit well with me. I was afraid that Athyna would not make it if the test
showed anything wrong.
When I got home, I called my best friend and asked her to look up Williams Syndrome on her
computer. As she was reading to me what she found, I asked her if there was anything
about early death. She said no. I said fine, anything else I could deal
with. As I read case stories of children with Williams Syndrome, my heart
sank. Everything seemed to compare. The pointed up nose, the almond eyes, her
ears and the fussiness. Yet I convinced myself that she was just a fussy baby.
She was a fussy eater, but she ate and was gaining weight. Her motor skills are
good. She lifted her head. She didn't hold it up, but no baby does at 1
month. She flails her arms and legs and she's thriving. My friend told me that
she read that not all cases are the same.
My biggest concern at this point was that Athyna's mom didn't seem to
want to bond with the baby, especially when she was fussy. How would she feel if her
daughter was not "normal"? I sat both her and my son down and told them
what I knew, which at that point was not much. My son's response was, "what do
you want me to do, say that I won't be proud to hold my daughter's hand while we're
walking down the street? I'm going to love her no matter what."
"No", I said, "I want you to understand that if Athyna has William's
Syndrome, it defines who she is and there's no changing that and to accept it."
He said he'd cross that bridge when he got there. I guess I could understand, for I,
too, had hope. Miss Sands just said "there's nothing wrong with my baby.
Her heart will be fine and she doesn't have W. S." My response was,
"she may not have W. S., but she does have a heart problem -- which we have to
watch out for." But, at least she gave a response. Maybe she can bond
with Athyna.
Well, as you can guess, the day of truth arrived. My son, Miss Sands and I sat in
the doctors office. He started to explain about chromosomes again and I knew Athyna
had W. S. He kept explaining, but I didn't hear what he was saying. I
held Athyna tight in my arms and couldn't hold back the tears. It wasn't because I
didn't love her anymore, but because my heart ached for her. So many things can go wrong
within the first 2-5yrs -- kidney failure, high calcium levels, failure to thrive and
the mother still hasn't bonded with Athyna. The doctor said that at least we know
why the baby fusses so much, which should ease our worries. When Athyna cries,
and we don't know why, I don't believe that W. S. alone makes her cry. It
seems to me like she's in pain and now I'm told there's nothing I could do to ease
it. I felt helpless. He said that the good thing
is that this is the first case that he has seen where it was found so early -- so at least
they knew what to look for and can monitor her closely. Every 4 weeks they would
draw blood and examine her and if anything came up they can treat it in time. Early
intervention can be started now to help her with her gross motor skills. That at least
made me feel better. The doctor told us that usually children with W. S. have
some form of retardation that can range from mild to severe, but that we wouldn't know
until she was older. My son didn't say a word. Miss Sands asked if there was any way
to stop of slow the process down. The doctor explained to her again that this
was a genetic disorder. It is who she is, just like our chromosomes define who we
are and how we look. He said her features would change as she got older -- to what
extent, we would find out as she grew. We made an appointment and left. As we
were leaving the office, the doctor and his assistant asked me if I would be ok. I said,
"yes, I was just hoping that she didn't have it." They gave me the number
for early intervention and we left.
On the way home, everyone was silent. It was a silence you could hear. Even Athyna stayed quiet. I knew that I had to stay strong for my son's sake and Athyna's sake. I hugged my son and told him that every thing would be alright. I will help him and the baby's mother in any way I can. Athyna's mother still hasn't bonded with her, so I decided to take over her care and to get temporary custody.
Athyna is going to be 3 months old on December 25. She fusses from 9 P.M. until 4-5 A.M. She has a hernia in her pelvic area, which needs surgery, but has to wait, because if she needs heart surgery it will be too much for her. She is also anemic. She's alert. She follows with her eyes. She loves the mobile that my friend, Mary, gave her. I got her an activity center and she lays in the center and likes the toys above. She responds well to sound but what we consider ok, she finds too loud. She loves music. It seems to soothe her. She especially likes when I place my lips above her ear and sing softly -- "and I will take you in my arms and hold you right where you belong till the day my life is thru, this I promise you, this I promise you" .
I consider myself blessed because she has good moments. All in all, she's a good baby during the day. She doesn't cry or fuss much -- only when she wants to be fed or changed. She doesn't sleep much either. She might take 5-10 naps but that's about it, and, in between that, I keep her entertained with the mobile, activity center, talking, always interchanging because all these things keep her entertained for all of 5 minutes. Since I know that her muscles and joints can stiffen, I massage Athyna at least 2 times a day. She likes that, too. So you can imagine, I have a very busy day and a very sleepless night and in between, I sleep. Crystal, her mother, will take her for one feeding, sometimes 2, but only if Athyna's not fussing, and each time the baby has to be given to her or she has to be told to take Athyna, she won't take her on her own.
At first, when I read other case stories, it horrified me that they described their experience as a nightmare. Then, I realized the nightmare was in not knowing what was wrong. When Athyna gets into her crying spell, I cry and I know what's wrong. I can imagine how it must have been for those mothers who didn't know and doctor after doctor telling them that there is nothing wrong, knowing in their hearts that something was, and it terrified them.
You know, it's ironic. I took Athyna to the cardiologist. He
said the heart was still the same so we can wait a little longer for surgery, but in the
meantime, watch out if she fusses too much or is not eating well. I said she's
like that now. He said "yes, unfortunately, children with W. S. exhibit
the same signs." I said, "well, then you have to give me something else to
go by or I'll be here everyday." He said, "if she starts turning blue --
even around the lips -- then bring her in." I know that there's so many things
that might happen and I must say that I'm prepared for what might happen, and with that,
I'm ready, willing and able to take care of Athyna.
LUZ
