Here is the full story of our daughter and how we struggled with her diagnosis, doctors and the medical professionals during our year long journey.
Christmas Photo 2004 (This was taken the day before she passed away)
first ultrasound appointment would marked the roller coaster ride of
our journey. A missed heartbeat at my 8 week appointment would only
show a tiny little thing measuring 5 weeks gestation. I knew how far
along I was. I fought with the doctors, waited 3 hours to be seen. The
whole situation was a nightmare. Only to get worse. I changed doctors three times from that moment on. Wishing so badly I could go back to the hospital I delivered my oldest daughter at. They were amazing. I knew that I would have better care. But sadly my insurance didn't allow me to travel out of state. I was miserable.
had horrible care from the Doctors. Many who just didn't seem to care
that I was carrying a living baby. They would not let my
husband in with me at any of the appointments. At my 19 week growth
scan I was excited to confirm my suspicions that we were indeed having
another little girl. A little girl we would name Anabelle. After
loosing my mother-in-law only a few short months before, Anabelle would
be the start of something happy we could all look forward too. A happy
welcome to the dreaded start of the new year. She was to be named after my husbands mom:
Ana, her Vovo.
I went into my ultrasound appointment alone.
Scared. Worried. The ultrasound tech was cruel, cold, and had no
heart. She would scream at me to move a certain way, to stop talking. I
asked to see the monitor and she refused. Another doctor came in, and I
knew that moment something wasn't right. I saw a glimpse on the
screen. She didn't look like a healthy 19 week little one. Her face
was shaped differently and her belly just seemed small to me. I left
the appointment feeling confused, worried and needing answers. I asked questions. I told them my concerns. Instead I got glares. As if I had done something wrong. My
husband chalked it up to the office staff and their unwillingness to
have a heart. After a terrific pregnancy, doctor/patient care and a wonderful OB for our first child. This behavior, care of the staff, doctors and nurses. Were enough to make me scream. It was TERRIBLE!!
The following day after my appointment I
left to visit family in Maine (July of 2004). Its then I got that call that would
change my life FOREVER. I can still recall the words of the nurse on
the other line, calling from the Rhode Island prenatal diagnosis center.
"Miss. Martin, I am calling to let you know that we received your
blood work and your daughter's (congratulations by the way on your
little girl) recent ultrasound pictures and your blood AFP test. I just
want to let you know that we have noticed that she has some chorid
plexis cysts on her brain. This could possibly be the result of a
chromosomal defect, but in 90% of the cases, they go away on their own
and its nothing to worry about." This is when I asked her what kind of
defects could it be. and she told me "Trisomy 18 is one of them, but
please don't put yourself in a panic and by all means, don't go on the
internet to look it up, it will only worry you more." The rest of the
conversation was a blur. I remember making a new appointment with her
for the end of the week. Jason wasn't with me in Maine that week, so I
called him on the phone and told him the news. Immediately I went
searching on the internet. What I found was devastating. Death and
"Failure to Thrive" were pretty much the theme of any articles. Percentage of miscarriage, still birth and live births plastered most of the sites I read. I
told myself I would wait until further testing, but still continued to
find out all I could on this subject. Calling, researching, talking
with anyone who would listen.
I finally returned back to Rhode Island and barely had anytime to really grasp what was going on. We
were immediately seen by a high risk doctor and prenatal genetic
counselor. Both whom I immediately disliked. I found myself growing a
*VERY* thick skin and immediately spoke up and said that I wanted
someone different. Thankfully, they were accommodating and I had very
little issue getting both a new doctor and new counselor. To this day, I
am so grateful I made that switch. Our genetic counselor Caroline was
amazing. We fell right in love and she really listened to everything I
had to say. She never once made me feel like I was crazy for trying so
hard. She did everything she could to look into all the current
information I had for Trisomy 18 and was always available anytime I
called. I just loved her.
She of course went over the statistics,
let us know what "COULD" be the outcome, but because of my age and
testing numbers, it just didn't all add up. Many of the Doctors begged
us for an amnio but I refused. I knew that if the outcome wasn't good,
and she was born alive, they would not do any life saving measures even
if we requested it. I did NOT want this for my daughter. So we said no.
The risk of the amino far outweighed our options to find out her genetic
makeup. I set up an appointment with my pediatrician and went and talked to her about the recent news. She was our savior. As she knew very little about Trisomy 18 and 25 years as a doctor she had never come in contact with an actual case. She went above and beyond to make sure we had everything. She got on the phone with her friend who was a heart doctor and scheduled a second opinion. Called to major children's hospitals. Read on the internet. I loved her for that. And felt I wasn't alone in the journey.
We went through our pregnancy as "normal" as
possible. Normal for us at this point was NST's (Non Stress Tests)
Ultrasounds, and growth checks three times a week. Depending on how
Anabelle was feeling on a particular day, we could be anywhere from 20
minutes in the office to 3 hours. So it made the last 12 weeks very
long. Babies with Trisomy 18 typically don't move around a lot in
utero, and if they do their small size would make it harder
for you to feel them moving. I spend many evenings worrying and
wondering if she would still be alive. I think it was the hardest time
for me. I just couldn't come to terms if she was to pass away before she
even had a moment to live. I accepted the fact that there was a 99.9%
chance she was not going to be with us, I just wasn't willing to accept
the fact that she could pass away before being born.
arrival was stressful, and full of heartache and worry. Not even a happy joyful one. I spend a
good 2 hours in the Delivery Triage of the hospital. My first time at
Woman and Infants (as I had my first child in Boston) I was expecting a
warm atmosphere, with nurses and doctors their to help you anyway they
can. That didn't happen. Instead, I found myself arguing with a doctor
that wanted me to have an amnio. I was only 37 weeks at the time, and he
felt that it was just too early to deliver her, not knowing if her
lungs were mature. I flat out told him, under no circumstances would I
have an amnio. She had stopped growing 2 weeks prior, and I knew it was time to deliver her that day. I told him if he wanted an amnio done so badly, go
do it on himself. I was angry, livid and tired of doctors thinking that
they knew best because they had the piece of paper hanging on
some dingy wall saying they did. He wasn't happy with me and spoke to my
husband saying "Are you going to let her speak to me like that." My
husband, looked him right in the eye and said, YES I AM. Your on your
own buddy. He left the room and didn't return. About 30 minutes later,
a nurse came in the room, in a very rude tone and said I got my wish.
Looked right at me and said that my husband and then 22 month old
daughter had to leave, that they weren't allowed upstairs. I was livid
by then. Jason quickly made arrangements for our daughter to stay with a
friend until my mom and sister arrived later that night/early morning.
They brought me upstairs at 8pm and things began pretty quickly.
told them that if she came out breathing, I wanted to see her before
they whisked her away, that they were to help her based on her being a baby, not a baby with Trisomy 18. I told them that my husband
was to go with her after delivery to the NICU.
moment I was hooked up to the monitors and settled in with the nurse,
its the last thing I remember before Anabelle was born. After she was
delivered I remember them working on her, bringing her downstairs, and
Jason going with them. I remember my husband taking video of her after her birth. And the doctors and nurses getting mad at him and telling him to put it away. I struggle everyday with this,
because I don't have the memories I want to have. Only the ones people
tell me. Or what I see in small video segments that Jason was able to
Anabelle Eileen Martin Rodrigues was born on
November 11, 2004 at 6:19am. Weighing in at 4lbs 6 oz and was 17 inches
long. She was beautiful, she was tiny, she was ALIVE!
next few days were an emotional roller coaster. From hearing doctors
and nurses tell you she would not survive the night to others telling
you that I had to just let her go and stop dreaming a life that she
would never have. I knew the outcome, and I knew the statistics. The
difference between myself and all those people around me, was that I had
hope. Hope for her, hope for myself. Hope for other parents dealing
with this now and in the future. I didn't want Anabelle to be just a
number in a book. I wanted her to do as well as SHE could do. And that
was the most important. I would fight for her and with her as much
as she needed me too. She was my child, my daughter. I didn't see her
disability, I saw her as a beautiful baby who just needed the extra love
and support to get through each day.
Yes Anabelle had
Trisomy 18, later confirmed by a blood draw two days after her birth. Yes
she showed all the signs of a baby with Trisomy 18. Small weight,
strawberry shaped head, fingers that were crossed and wouldn't open up,
small eyes, nose and mouth. Ears that were shaped as if she were a
little elf. Small belly. Rocker bottom feet. Issues with feeding and breathing. But you know what, I loved her just the same.
We spend the
first 19 days of her life in the NICU at WOMAN AND INFANTS HOSPITAL. I
loved her nurses. They were caring, warm and friendly. They took their
job very seriously and loved the babies as if they were there own. We
found out one of Anabelle's nurses had gone to school with two of my
classmates from high school. Which was very comforting. She called all
the time, took pictures when she could and kept up with Anabelle's day
to day health. She truly did fantastic. She was on a breathing machine,
but was only on room air, she was being fed by a tube through her nose on a continuous feed
and overall was doing great. Everyday brought new challenges. Smiles and heartache. I fought with doctors who didn't believe she should have been born. One doctor even told us we needed to have arrangements made with a funeral home before the end of the weekend. I saw medical books that were left by her bedside from the 90's. Opened to Trisomy 18. I was disgusted and angry. I told the Doctors and the student doctors that if they wanted to know more about the subject. Then maybe they should take the time to read articles that are more up to date. Talk to families with children living with Trisomy 18 and learn more about something they don't know. My anger was more because of there attitude.
When the day arrived for
her to come home. My heart must have been beating out of my chest. I was
worried she wouldn't make it off the machine. That she would pass away
minutes or hours after they took the tubes out. I was a wreck, but
didn't show it. I wanted her to prove to the doctors that Trisomy 18
isn't a text book case. Its something you have to handle based upon your
understanding of that particular child. Not as a whole, but
individually. I remember her doctor from the NICU wanting to be there. A
mean soul of a man who I truly found myself hating more and more with each
passing day. After she came off the machine, he wanted to hold her
before we left. I reluctantly gave him the ok. The minute he picked her
up, she not only threw up all over him, but had a very large poopy. I told him it served him right speaking ill about her next to her
bed. Putting her in the grave before she was even there. I didn't know
how long she would have with us. But at that very moment it made me feel like my
choice of carrying her to term and helping her live was truly the best
one. Despite what doctors, nurses and those around me said. I had made the right choice. I had fought for my daughter when others didn't. I had researched and talked to others who had little ones diagnosed and living with Trisomy 18. I had made a plan and stuck with it. I knew nothing was garunteed. Except on thing. I loved her. No matter what.
Anabelle left the hospital on November 29th 2004 weighing in at 3 lbs 15 oz.
we took her home, we wanted it to just be the family. Myself, Jason and
Olivia. A family of four. We spend that day enjoying each other.
Watching movies, eating lots of take out. Making memories. The next two
weeks before her passing was a whirlwind. Trying to capture every moment and not missing our time we had with her. We took trips to the mall, saw
Santa, visited family. Tried to make as many memories as possible.There was so much we wanted and hoped to do. But November in New England is not ideal to do very much. I had four things that were the most important to me that I wanted to have her see and do before she passed.
1. Leave the hospital without being attached to life saving medical equipment (she was only on oxygen and that was sometimes. and an apnea monitor to keep me from loosing my mind)
2. See Santa Claus and have her picture taken. (to this day he still asks how we are doing)
3. Put up the Christmas tree and decorate it as a family
4. Have a professional Christmas family photo taken.
All accomplished before she passed away. I still smile at that.
last day of her life was hard but beautiful. My husband was 45 minutes away at a concert for his brother. Olivia was taking a nap and I had just gotten out of the shower and dressed when her apnea monitor went off for the second time that day. I immediately picked her up and knew she was ready to go. I took her off the apnea monitor and just held her. Sang to her. Told her I loved her. She passed away peacefully
in my arms at exactly one month of age on December 11, 2004. She was
the sweetest little girl. My husband later came home to an apartment fulled with people. Her Hospice nurse (a wonderful young lady who I later found out was expecting her first and Anabelle was her first case) our Pediatrician. And our neighbors. My FIL came in and helped keep our oldest busy. Jason and I made phone calls to the funeral home we had used for his mom. It wasn't that long ago after we lost his mom. So when we called. They remembered us. We choose to have her cremated so we could have her with us everyday. I didn't want her to be in a cemetery that we needed to feel guilty if we couldn't visit. And I didn't want to worry about the prospect of every moving out of RI and never getting to be close to her again. So cremating her was a much better fit for our family. And I am so glad we did.
Anabelle taught me to fight for what I believe in. That no one person has all the answers. And that I can do anything
that I put my mind too. I learned so much that year carrying her, giving
birth to her, watching her here on earth and then loosing her. It's
never easy to loose a child, but I don't look at it as loosing a child. But gaining the best gift of all. An Angel.
Anabelle Eileen Martin Rodrigues
you or someone you know has had or is currently going through a
diagnosis of Trisomy 18 please feel free to contact me at
email@example.com or visit my blog at
www.kileyandjason.blogspot.com. I am happy to help anyway possible. Any
and all questions can be asked and nothing is too personal.