what I want you to know: having a child with trisomy 18

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. (If you are new to this blog, regularly schedule programming will resume after the holidays, but you can check out the “Best Of” section in the meantime). If you would like to submit a story to this series, click here. This guest post is by Kiley.Photobucket

Today marks a special day. Today Anabelle would be 6 1/2 years old. Here is the full story of our daughter and how we struggled with her diagnosis, doctors and the medical professionals during our year journey.

Christmas Photo 2004 (This was taken the day before she passed away)
 

Her story began like all new pregnancies do.  With the announcement of "I am pregnant".  I was excited, shocked, nervous.  This pregnancy was nothing like finding out about my first.  I knew in my gut the moment I took that test that something wasn't right.  The severity of how badly things were to become were to unfold in ways you only see on soaps.

The 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 see.  The whole situation was a nightmare.  Only to get worse.

I had horrible care from the Doctors. Many who just didn't seem to care that I was carrying a living, breathing 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 to finally look forward too.  A happy welcome to the dreaded start of the new year.  She was to be named after Ana, her Vovo.

I went into the 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.  My husband chalked it up to the office staff and their unwillingness to have a heart.

The following day after my appointment I left to visit family in Maine.  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 visiting family, 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 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 from Maine 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 desire to find out her genetic makeup.

We went through our pregnancy as "normal" as possible. Normal for us was now coupled with 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, because of 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. And I didn't.

Her arrival was a stressful one. 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 ago, and 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 always new 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 are 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.

I 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 child, not a child with possibly having Trisomy 18, and that my husband was to go with her after delivery to the NICU.

From the 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. That's all. I struggle everyday with this, because I don't have the memories I want to have. Only the ones people tell me, or I see in small video segments that Jason was able to capture.

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!

The 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 to me. 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 blood work 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. 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 and overall was very healthy.

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 souled 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 accident as well. 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 that moment made me feel like my choice of carrying her to term and helping her live was truly the best one.

Anabelle left the hospital on November 29th 2004 weighing in at 3 lbs 15 oz.

When 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. We took trips to the mall, saw Santa, visited family. Tried to make as many memories as possible.

The last day of her life was hard but beautiful. She passed away peacefully in my arms at exactly one month of age on December 11, 2004. She was the sweetest little girl. She taught me to fight for what I believe in, that no one person knows 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 her, I look at it as though I gained much more then her passing.

Anabelle Eileen Martin Rodrigues

 
If you or someone you know has had or is currently going through a diagnosis of Trisomy 18 please feel free to contact me at kiley @ walkingalready (dot)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.

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