In early August, my husband
and I found out we were pregnant, this would be our
1st. child together. We are considered by all who know
us, as the Latin Brady Bunch. You see, my husband has
3 kids Julio 17, Jonathann 18, and Little Ricky 20.
I have Nikole 9 and Nathon 17, and now we were going
to be blessed with a child of our own. We were all so
excited when we found out we were having a girl. Nikole
was elated, finally she would not be the only girl in
the house. Words could not express the joy that Ricky,
my husband had, when he found that he would have a little
girl which he wanted so badly.
Our happy journey came to a
complete stop, when on Dec. 28th 2005 at my 1:30 pm
doctors appointment we found out that something was
not well with our baby girl. The doctor told us that
it looked like our daughter had a diaphragmatic hernia,
which meant that her diaphragm had not closed properly,
and that her stomach had passed upwards towards her
heart. Her lungs would most probably have a problem
developing. All I could do was cry, and cry, and cry
some more. At that time the doctor suggested that I
delivery my daughter in Gainesville, Florida (which
is about 6 hours away from us by car) since one of the
best doctors that operate on this kind of condition
was there. He also suggested that we do an amnio
test, just to see if we were facing any other problems.
(Early in my pregnancy my husband and I had refused
an amino due to the risk involved.) But at this time,
we wanted to be prepared so that we could do whatever
we could to help her.
Since her stomach was close to her heart, our doctor
also suggested that we see a fetal cardiologist.
That same day he sent us to one. Again, more bad news
that day, our daughter also had a heart condition. The
lower and the side wall in her heart were missing, but
the doctor told us that this was something that could
be fixed with an operation, and should not be a big
problem. Our biggest problem was her hernia, how
much I wished that would have been so.
On Dec. 30th 2005 we received
a call from our doctor. I know when I saw my husband’s
face that there was something else wrong. The partial
amnio test came back and our daughter had a condition
called Trisomy 13, which was considered to be incompatible
with life as we know it. The consideration of
sending us to Gainesville, Florida to have our daughter
operated on for her hernia was no longer suggested by
our doctor. He suggested that we should enjoy
the little time left of my pregnancy, and that he would
do his best to have our daughter born alive so that
we could hold her, love her, and just let her go to
sleep in my arms. My heart stopped, my knees gave out,
and all I could do was scream and cry.
Two weeks later the full results
came back from the amnio test, and it told us that my
daughter had Full Trisomy 13. We had so many questions.
The doctor suggested that we go into the Internet to
find out information, and to see some pictures of what
to expect. That night I went into the Internet,
and found this wonderful web site,Living
with Trisomy 13, and met a wonderful lady ThereseAnn.
I e-mailed her that same night. I also saw some
of the pictures of children born with this condition,
and I could not believe what I saw. Again that
night my heart stopped. All I did was cry to the
point that my husband logged me out and told me that
I had had enough; “You don't need to see or read
any more, our daughter will be ok you'll see.”
The next day ThereseAnn called me and we talked for
about an hour, she told me of her daughter Natalia,
and for the 1st time in a two week period I felt that
there could be some hope for our daughter. Through this
web site I met so many wonderful people that helped
me so much, and made the following weeks a bit easier
to handle. Since I lived in Miami, Florida, Therese
asked me if she could give my number to a lady named
Courtney from Naples, Florida who just 5 months earlier
had lost her baby girl Gemma, and I said yes. At this
time I feel it was the best “yes” that I
have ever given to someone.
The bond that Courtney and I have shared has been so
unbelievable, she has been my shoulder to cry on, and
truly someone who knew so well what I was feeling and
going thru. Her husband also was so wonderful he spoke
to Ricky and was there for him also if he needed to
talk. Our friends and family were all behind us,
constantly praying to God for a miracle to happen, so
many friends whom never went to church, or even prayed
to God were praying for our little girl and our family,
and Ricky and I got so much closer to God.
At that point Ricky and I had made a decision that if
our daughter was strong enough to make it we were going
to do everything in our power to help her fight for
her life no matter what the doctors say. With my friend
Courtney's help I created a birth plan for our daughter.
We had also made an appointment to see an infant surgeon
to see if he would operate on our daughter. This appointment
took place on Feb. 7th 2006 at Memorial Regional Hospital.
This doctor agreed that if our daughter did fight for
her life, he would do the operation. He also invited
us to see the NICU unit at the hospital that same day,
so we would see where our daughter would be. Later that
afternoon I also had a regular doctor's appointment.
Again, disappointment; my daughter was not moving a
lot and the doctor did a test with a buzzer to see if
she would move and she did not. He saw that her heart
was still beating, but told us that if we wanted to
see her alive and spend some time with her, I needed
to deliver her now, and not wait till March 14, 2006,
which was her due date.
Our precious Katherine Elizabeth Verjano was born the
very next day by c-section at 10:47 AM, she weighted
5 lbs 5oz, and was 18in long. She was so beautiful.
She had the most beautiful curly hair, and God had certainly
blessed her. She had no outward malformations, but still
did have her diaphragmatic hernia and her heart condition.
I only saw her for a brief moment, but it will be a
moment I will never forget. My husband did have a bit
more time with her since they had asked him to go to
the NICU unit to see her. All the wonderful nurses and
doctors did everything they could to help my precious
Katherine Elizabeth fight for her life. Mary helped
us take pictures of Katherine Elizabeth while she was
in the NICU unit and really touched our hearts by showing
up at Katherine Elizabeth’s funeral. Also,awonderful
nurse named Elizabeth baptized her when she saw they
she was not going to make it. You see, her little
lungs could not handle it and were collapsing.
So, once again they called my husband into the NICU
unit and asked him what he wanted to do with our precious
Katherine Elizabeth. With much sadness, he said,
“let her rest.”
My precious Katherine Elizabeth Verjano, passed away
at 12:30 pm. I was able to hold my beautiful baby girl
in my arms for a while, after she left with her angel
to be with our Heavenly Father in heaven. That is something
I will always remember.
I was still in the recovery room; all the nurses were
crying along with me. I was moved to a private room
so that our family & friends could meet our precious
Katherine Elizabeth. We all cried, held her, kissed
her, and took many pictures. I had bought her a beautiful
light green and pink outfit that the nurses put on her,
and Ricky, my family, and I were able to be with my
precious Katherine Elizabeth until 6:00 pm. Even up
to that time our precious little girl still had a beautiful
smile on her face, and was so at peace.
The time with my precious Katherine Elizabeth was just
but a second, but it is a second that I would live over
and over again if I could. In that brief time my Katherine
Elizabeth brought so many people together, brought so
many people closer to God by praying for her and our
family. She has brought so much joy and love, and has
done so many wonderful things; more then many of us
have done in our life time.
Please contact me if you have
gone through or are going through a similar situation
and you need someone to talk too. My e-mail address
to Trisomy 13
You can read more about
Trisomy 13 and receive incredible on-line support through
the private message board on www.livingwithtrisomy13.org.
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.