Angela
 It
was my second prenatal visit and I was anxious. When I had
confided my fears to my doctor he said, "We canÕt really
confirm thereÕs a pregnancy until we hear a heartbeat."
At the end of that visit my doctor rubbed lotion on my stomach
and rolled the instrument until we heard a fast "da dum, da
dum...". He smiled and sighed, and I could tell that it was
still a thrilling sound to him despite the many times heÕd heard
it. I listened to the rapid beating again and was thrilled. Little
did I know that in three months that sound would have new, fearful
meaning to me.
When I was five months pregnant I went in for a routine
ultrasound. I noticed that the doctorÕs assistant was having
trouble and kept poking at my stomach. When I asked if something
was wrong she said no, the baby was just laying funny. At the end
when I was in a rush to get to the restroom she said, "If you
have another ultrasound at least you wonÕt to have to drink a
lot of water to look at the placenta." In retrospect, IÕm
sure she knew I would need at least one more ultrasound.
My doctor told me the following week that he wanted me to have
a level two ultrasound as the babyÕs heart didnÕt look quite
right. He said their equipment could be the problem but he wanted
to double check. I told my husband about this and we were
convinced the problem had to be the equipment, after all, the
assistant seemed to have so much trouble. Still, I called my
sister that night and told her I was slightly worried but
everything would probably be O.K.
For my peace of mind I wanted to get this ultrasound over with
as soon as possible. The next day I rushed in to the hospital when
I was told the only opening was in 45 minutes! I told the people
at work IÕd be back that afternoon.
I will never forget that awful gray day. The assistant first
took pictures (including extras for me to keep of the baby) and
then the doctor came in and did more checking. When he was done I
asked hopefully, "Is everything O.K.?" His words and
tone were forbidding, scary.
"No, everything is not O.K., your baby has a terrible
problem," he said. "Half the babyÕs heart is not
developed. This is very serious". I started gasping and
crying in shock as he continued, "The baby may also have DownÕs
syndrome as well ". He said, "IÕm so sorry, you will
have a very hard life."
I was a mess. I was alone, not really comprehending everything.
He put some of the ultrasound pictures on a screen and pointed out
where the missing portions of the heart should be. He then gave me
information on this condition, Hypoplastic Left Heart Syndrome .
He insisted that we needed to do amniocentesis and cordiocentesis
IMMEDIATELY to make sure there were no other chromosomal problems.
Now I was really afraid. I asked for some time to make some
phone calls, and he agreed that we would do all this after lunch.
I called my poor husband Bob, who had no idea I had even gone to
the hospital to do the ultrasound, and sobbed the news into the
phone and begged him to come to the hospital. It was his lunch
hour and he rushed over. I called the people where I worked and
told them I wasnÕt coming back that afternoon and hysterically
gave them the news. Then I called my Mom and asked her to be with
me after all this checking was done.
Then I sat back and pondered over the options this doctor gave
us. He mentioned the possibility of a heart transplant or
reconstructive surgery . He didnÕt sound too optimistic about
either. He made the Norwood sound experimental and mentioned the
risk of rejection with the transplant if you could get a heart. He
didnÕt mention the third option, but I knew it was the reason he
wanted to do the cordiocentesis so quickly.
"Blood from the umbilical cord is like liquid gold,"
he told Bob and I. "With amniocentesis we have to wait a
month for news that the blood can give us in four to five
days." I had always feared amniocentesis and figured I would
never have it done as I am pro-life. It wasnÕt that bad but the
cordiocentesis was something else. I didnÕt watch the screen but
my husband could see the needle and the baby and he told me later
he would have gone crazy during this procedure if our child had
been healthy.
After we left the hospital I went home, watched soap operas
with my Mom and was just wiped out. I had no appetite and really
didnÕt care much about anything. I was writing off this baby as
not having any chance and telling myself we would try again,
though now there was a 10-15% chance we could go through this same
experience. Later I had a piece of pizza and felt the baby move
and thought, she (or he) canÕt help this. I canÕt give up on
this kid now! I knew I couldnÕt have an abortion. Even if this
baby had so many problems that there was no hope and we decided to
let nature take itÕs course after the baby was born, I would
want to give the baby as much time and life as I could.
The doctor called on Wednesday and left a happy message on my
voice mail that there was no chromosomal damage. In other words,
there was hope.
He referred me to a cardiologist at our local childrenÕs
hospital for a second opinion and to check out our options. I made
an appointment to meet with her on ValentineÕs Day, and in the
meantime, did my own research at the library. I found information
about the success our local hospital was having with heart
transplants and harrowing articles on insurance companies and
families going bankrupt. Now my concern changed from "Can
anything be done?" to "Would we lose everything we own
to pay for treatment for our child?"
The meeting on ValentineÕs day had a very different tone, and
we received more good news. The cardiologist was also pregnant, so
I think she was especially empathetic to what we were going
through. IÕm sure we appeared traumatized. As she did the
echocardiogram (though I didnÕt realize at the time thatÕs
what she was doing - looked like yet another ultrasound to me!) we
told her the other doctor said there was no aorta. She said,
"Nah, I can always find an aorta" and she did, though it
was very small. I asked her why all the library searches I did
referred to hypoplastic left heart, not right, and she joked,
"The people on the left are more outspoken." At the time
I thought that was tremendously funny, I think I needed a laugh!
After she was done she disappeared for about twenty minutes,
and then came back with two sketches she had drawn to illustrate
our childÕs condition. "Your child actually has two heart
defects, hypoplastic left heart syndrome (HLHS) and an unbalanced
AV canal," she said. She explained that the baby had a huge
hole in the heart which had caused the left side not to develop.
There was a small amount of material on the left side but it was
not functioning. The AV canal problem we could ignore, because it
would not have an impact on their treatment of the more serious
problem, HLHS.
She had also listed the two types of treatment, a heart
transplant or the Norwood procedure. Her information made these
sound like very plausible choices. The survival rate from the
transplant was 98% but there was a 10% rejection rate and 10%
infection rate. She also mentioned that long-term there was the
risk of coronary artery disease which she also listed as 10%. She
felt that due to the babyÕs blood type, which was A+ (because
both my husband and I have that blood type) we would have an
easier time getting a heart, and she projected a 3-6 weeks wait.
She then described the reconstructive surgeries and I got lost
very quickly, and wished IÕd paid better attention in Biology
class in college. But I did understand that there was an 85%
survival rate for the first surgery, 95% survival rate on the
second, and a high survival rate on the third surgery although she
didnÕt have figures to give us.
We asked if insurance would pay for either procedure. She
seemed startled at the question. "It should cover both,"
she said. Neither was considered experimental. Because we belonged
to an HMO everything would be covered. This was also very good
news.
I then asked, "What would happen if we did nothing?"
Bob looked at me as if I was crazy but I guess I had to know. She
told us we would take the baby home and the baby could live for
days or weeks before he or she died. All three of us then agreed
that with our other choices there was no reason not to fight for
this kid.
She asked us for the name of our pediatrician. When we told her
she smiled, and said he was her pediatrician, too. She said she
would give him a call and let him know about our baby.
Bob and I left the hospital feeling encouraged. I then called
my Mom with this optimistic report, and returned to work and
showed them all the information. I tried to concentrate on my
paperwork but had a hard time. I came home that night to a
beautiful bouquet of flowers from my wonderful husband. I knew we
could get through this together.
I still had four months of pregnancy to endure and anticipate.
I had to figure out how I was going to handle whether or not to
tell people about the babyÕs problem. I work at a University as
an academic advisor with Business students and easily have contact
with a thousand or more students each semester. Of course I couldnÕt
hide the pregnancy after a certain point so I tried to pretend
everything was o.k. I found the precept of cognitive therapy, that
you can change how you feel by changing what you think, to be
true. By pretending everything would be o.k., I began to believe
it - at least when I was at work. With the faculty and students
who saw me infrequently I acted like this was a normal pregnancy.
To the students I saw on a regular basis , I did mention that the
baby had a heart problem and would need open heart surgery soon
after birth but I didnÕt elude to the extremely serious nature
of the problem. The only reason I even mentioned that much was I
didnÕt want to come back to work and have people asking how the
baby was doing and then have to say, she didnÕt make it. I felt
I needed to prepare some people to protect myself.
My husband and I also had to figure out how much we would tell
our two-year-old son. He knew there were problems just from
hearing my husband and I talk and watching our excitement for the
pregnancy dim. We decided to tell him the edited truth, that the
baby in MommyÕs tummy has a heart problem but the doctor would
fix it after she was born. He seemed comfortable with this. He
went to several of the ultrasounds with me and was very
interested. During one ultrasound especially the doctor traced the
blood flow into and out of the heart and all the colors on the
screen got my son excited. "Mom, is he fixing it?" he
asked. I said no, that would come later after the baby was born
If anything good can be said to have come out of this
experience, it was that it brought out the best in people. Not
three days after I received the first diagnosis, when I was in the
depths of despair, I received my first Mass card from my aunt.
Thereafter I received countless cards with Masses and prayers
said, and also comforting cards from people who wanted to show
they cared. I found out my grandmother was saying a Rosary every
night for the baby. It all helped. I also began to feel that with
all the prayers that were flooding heaven that maybe God would
take care of us and watch over our baby girl.
The director of our sonÕs daycare found an article in
Babytalk magazine about a boy with HLHS who was almost two years
old and doing great. This article really lifted my spirits! HeÕd
had the Norwood and Glen surgeries and was due to have the Fontan
surgery soon. He looked lively in the picture and his parents
described him as very normal. This article also gave a very good
description in laymenÕs terms of what HLHS is and described the
reconstructive surgeries. We passed this article along to
different members of the family and everyone began to have a
different, more positive outlook.
As the end of the pregnancy approached, I wanted to talk to
other parents of children with this problem. I had no access to
the internet then, so I called the pediatric cardiologist and
found out she was on maternity leave. The head OR nurse returned
my call ,and after getting permission from several parents, gave
me their phone numbers. My husband and I were more interested in
going the reconstructive surgery route than a transplant, so I
called the two parents who went that route right away.
The first parent I spoke to kept quieting down her rambunctious
son, the one with HLHS. Just hearing him make all that racket was
comforting to me!! She told me that her son was operated on twice
in the 48 hours after the Norwood and once would have died if it
hadnÕt been for the pacemaker he was attached to after the
surgery. But his recovery was good otherwise and he was only on a
feeding tube for a few days. He had since had the Glenn and was
doing very well. This parent asked me, "Have you started
getting the babyÕs room ready?" I confessed we had not. She
told me, "YouÕve got to have faith. We were all prepared
for him to come home, I just knew everything would be fine."
She also talked about the insurance problems theyÕd had. Overall
she was very optimistic and crazy about her little boy.
I felt so out of control of the situation that I tried to
prepare everything ahead of time as best I could. It was a big
deal to me to nurse my baby but I knew there would be times after
the surgery when I couldnÕt so I contacted the La Leche society
to ask their advice. They recommended I rent an electric pump to
keep up my milk. I then called the lactation nurse at the hospital
where the baby would be delivered and she told me my OB/GYN could
order the kit to go with the pump as part of the hospitalization
fees. I learned that ChildrenÕs Hospital used a different type
of electric pump than the hospital where I would deliver the baby,
but they could convert the kit to work with both pumps.
My co-workers were also very supportive during this difficult
time. They listened to my fears, bolstered me with their optimism
and kept me upbeat by focusing on the fact that I was having a
cute, fun little BABY. Everytime I went to the doctor they all
wanted to hear the updates and they looked at all the many
ultrasound pictures. They really rallied around me. Because we
have voice mail at work, I put together a distribution list that I
could send messages to after the baby was born, so all would know
directly from me what was happening.
Near the end of the pregnancy my OB/GYN discontinued the
ultrasounds and started weekly non-stress tests to check how
comfortable our baby was. I tried to make the appointments first
thing in the morning, and then I would bring orange slices or
something sweet to get the baby to move. The nurses were
interested in our situation, and one told me about another patient
sheÕd worked with whoÕs child had the same condition. The last
time sheÕd seen the boy was when he was five years old and had
had all three surgeries. She told me he looked great. I was so
glad she told me about him. As the delivery date drew closer, I
needed every bit of encouragement I could get.
My husband and I couldnÕt get motivated to put up the crib.
If the baby didnÕt make it, it would be too painful to take
down. He did buy girlÕs clothes at a Consul Shop, figuring they
didnÕt cost much and we could donate them to charity if
necessary. We also talked in a very general way about what we
would do in a worst case scenario. (ItÕs hard to write this now
when sheÕs doing so well but at that time we had to think this
way). I found myself crying at Mass every Sunday when I saw other
pregnant women or women with small babies. I would think that we
might be having a funeral soon at this church or a christening. At
church I could really let my guard down, face reality and talk to
God, and finally it just became too painful. I had trouble
sleeping at night. I began carrying the article about the little
boy who did so well everywhere I went.
ItÕs a strange feeling to have a baby in your womb who you
know is in danger the minute it is born. Your womb is the babyÕs
only protection, and birth puts your babyÕs life at risk. Unless
youÕve been in this situation, itÕs hard to imagine your
feelings as the delivery date approaches. Of course youÕre
uncomfortable, your back hurts , and you have this active baby
jumping up and down and punching your stomach so in that sense youÕre
ready to give birth. But you are also afraid.
Finally my doctor and I set up a time to induce birth on
Monday, June 19 (the day after FatherÕs Day). We spent that
weekend preparing. My Dad was to drop my Mom off at our house on
Monday morning on his way to work to watch our son Nicholas. When
the baby was born we would call her and my Aunt (the one who gave
us the relic) and she would pick up my Mom and Nicholas and head
to the hospital to see the baby. We would only have a short time
together and then the baby would be transported to ChildrenÕs
Hospital. I tried to see if they could even keep her a day at the
hospital I was delivering at and was told no, she had to be
observed right away.
Our pediatrician told us he wanted to know when I went into
labor, not when I delivered. I thought this was a strange request
but found out from him later that he knew things would be crazy
after the baby was born and he wanted to be our "voice"
in all the myriad of doctors and nurses we would deal with at
ChildrenÕs. He ended up being a very effective voice for us.
The day my daughter was born was a beautiful sunny day. We ran
into our pediatrician as we checked in and promised to call once
our daughter was delivered. I was excited, my husband less so, and
he told me later he felt as if once our daughter was born all our
troubles were beginning. The delivery was short (only four hours)
and everyone was wonderful. The head of the NICU came in about
half way through and told me they would let my husband and I hold
the baby for a few minutes after she was born and then they would
take her away to get her vital signs and give her prostagladin,
the drug that would keep her patent ductus open until her surgery
later. About 30 minutes before she was born the nurse checked my
progress and said the baby appeared to have brown hair. This got
me excited, because with all the problems our daughter had I hadnÕt
thought much about whether she would have brown hair like me. This
was such a normal thing to say under the circumstances.
Her birth went exactly the way we were told. The NICU staff
were an unobtrusive presence in the room, huddled in the corner.
When Angela was born I started crying, I couldnÕt believe after
all the anticipation she was finally here!! She was 7 lbs. 14 oz
with apgar scores of 8 and 9. Her eyelids were bloated with water
retention. My husband told me later he had secretly feared that
she had Down syndrome because of her eyes, and was relieved to
learn she didnÕt. He took a few pictures and then she was
wheeled away. We called Mom, my aunt, my mother-in-law and then
took off for the NICU!
Everyone gathered in the NICU and admired Angela, but it was
strange to hold a baby with so many wires attached to her. My son
was intimidated by it all and didnÕt want to get close to her.
We have a picture of the three of us and IÕm leaning way over to
put my arm around him as well. The staff also took many pictures
of us so I would have something to keep when she left. We made
arrangements for Bob to follow the ambulance to ChildrenÕs
Hospital and then I left the NICU. The staff brought Angela by my
room one last time before she left and I held her and said,
"IÕll see you again soon!!"
Am I glad I found out about AngelaÕs condition during the
pregnancy? I think so. I knew early on that my daughter would be a
gift, and I could take nothing for granted with her. I didnÕt
have the shock of holding a baby in my arms that I thought was
perfectly normal and then later learning she had a deadly defect.
My husband and I were able to research our daughterÕs options
somewhat objectively before she was born and to prepare ourselves
mentally that she might not make it. If I had not known before I
had her about her HLHS and was told the odds on the Norwood and
transplant when I was in emotional shock and hormonally unstable I
could very easily imagine that we would have decided to hope for a
heart transplant. As it was , that first week was very hard
because I knew it might be our last with her. Because we knew
ahead of time about her condition the doctors were able to give
her the best medical attention that first week and that increased
her odds of surviving the first surgery.
Angela made it through the Norwood procedure and the Glenn
Shunt surgery four months later. She is now two years old and a
very fiesty, independent toddler, developmentally right on target.
We await her third surgery, the Fontan, with much fear as we are
so attached to her. I ache at the thought of her being in pain
again.
I wouldnÕt trade her for the world. She has taught all of us
about determination and love that continues to grow as we overcome
each obstacle. I am still in awe of what has been done to her and
the capabilities of modern medicine. I am grateful to God that she
was born during this period when there is treatment available for
her condition. She is our beautiful little girl.
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