Let me introduce you to our family. My husband and I have been married since 1986 and we have three children, Stephanie is 15, Cody is 8 and Ethan is 2. We are a home schooling family and we attend Calvary Chapel Heartland and are born again believers. God has been our strength and our tower of refuge. He uses all things for His good.

During the latter part of 2003, I went through two miscarriages, one right behind the other.  They were both very hard to deal with, but we felt a peace from God. My husband was a little nervous about trying to conceive again, and of course, I was all for it! We let God be in control of whatever happened and if we found out we were expecting that would be wonderful and if not, we would know God was saying “your family is complete.”  By Christmas time of 2003 when I did not get pregnant, I accepted that maybe God was saying “your family is complete” and I was at peace.

In February of 2004, to my surprise, I was pregnant. I was truly surprised, but very excited, but I chose not to tell my husband right away, I wanted to wait and see if “it took.” I didn’t want to tell him and then miscarry again and him go through all that hurt again.  He surprised me about a week later by asking me out of the blue if I was pregnant. I asked what made him ask me that and he said he just had

a feeling, so I shared with him my good news. At first, he was nervous, but after a few days he became all excited… so much so that one would have thought it to be our first baby! Four children, we couldn’t believe we were actually going to have 4 children. We did choose to wait for several weeks before we told our children.

 

My pregnancy was worry free, as my previous three had been. I have always loved being pregnant. Watching my tummy grow and feeling that life and movement inside of me was incredible! Other than the morning sickness that I experienced with all three, my pregnancies were wonderful, joyous, exciting and I never had any complications.  We declined all tests offered due to my age being 39.  I was a bit more concerned since I was older, but still chose to avoid all tests since terminating was never an option, even if complications were to arise.

 

They say that with each pregnancy, you feel the baby move early on because you know what you are looking for and that seemed to be true with baby no. 2 and 3, but with this one, by week 19 I still had not felt any movements and worry began to set in. I called my doctor and he told me that it is not unusual to feel movements later, but that I could certainly come in and listen for fetal heart tones which I didn’t do because I was going in the next week for a regular visit. This was my first red flag that something didn’t seem quite right and looking back now, I knew in my mind that something wasn’t right.

 

At our visit that following week, we definitely saw her little heart beating and we found out she was a girl. I was finally going to get my Olivia Grace May.  When I was pregnant with my 3^rd child, I wanted a girl so badly so I could name her Olivia Grace. I had fallen in love with that name and thought it was beautiful. Naturally, I was slightly disappointed when he turned out to be a boy, but now I was going to get my Olivia Grace.

The ultrasound tech set up a follow up visit to get a better look at her kidneys. Nothing to be alarmed at, Just a little too early to see them clearly. I asked her how much the baby weighed and she said about 8 oz and that she was measuring about 1 week behind. Again, nothing to be concerned with….that was red flag number 2 and once again I heard that voice saying this baby is different.

We went back for our follow up ultrasound 6 weeks later when I was 26 weeks. I did begin to feel her kicking on a regular basis at about 22 weeks, but they were noticeably different than my previous pregnancies.  Her kicks were not as hard or as strong as my other babies… another red flag. By now my mind is really working overtime. She continued to be a very busy baby right on up to her birthday.

 

I asked my husband the night before our follow up ultrasound if he was going to go with me and he seemed to be undecided. I asked him didn’t he want to see his baby girl again and I let him know I really wanted him to go. God knew he needed to go with me and after the appointment my husband said he sure was thankful that he had gone and that I wasn’t there by myself.  

 

As we began the ultrasound, the tech said the baby was still a girl and did the normal measurements and looked at the kidneys which were fine. My husband noticed she spent a long time looking at the baby’s heart. When she was done, she said she would be right back. My husband said she has gone to get Dr. Harper and sure enough, in he came with her. After he looked for what seemed like forever, he told us that he saw some heart defects that he wanted a perinatologist to evaluate further and fear and panic set in and so did the tears. We were already familiar with a perinatologist back with my third child. He seemed to have a problem with his kidneys known as Hydronephrosis. We were told  that there was a good chance he would have Down’s Syndrome and possibly require surgery after his birth. We were very nervous for the remaining weeks of my pregnancy with him. Praise God, he was perfectly healthy at birth.

 

I could not believe my ears that Dr. Harper was telling me I had to go back to the perinatologist. I could not believe that my baby girl might have heart problems. I could not fathom that we were going to go through this all over again.

THE DIAGNOSIS

 

We used a different perinatologist that was about 2 hours away and they were able to see us immediately. Upon our arrival, we found ourselves in the office of the genetic counselor which took us by surprise. We were not prepared to see a genetic counselor for heart defects. She asked quite a few questions about our history and our families. She shared with us about Dr. Harper’s report stating that he had found a choroid plexus cyst (CPC) on the baby’s brain and asked if we were aware of that and we told her we were not. She said that CPC’s are not uncommon. These particular cysts show up in healthy babies and they do resolve themselves before birth. According to the evaluation from my OB, the CPC had indeed disappeared.

 

She then handed us an information sheet with the words Trisomy 18 circled and introduced us to the world of Trisomy 18. It is a chromosome disorder that occurs when a baby has 3 chromosomes in the 18^th position instead of the usual 2, giving the baby a total of 47 chromosomes instead of the normal 46. Babies with this disorder generally do not make it to term and die in utero. Those that do make it to term may possibly be stillborn, may die within several hours of birth or may live several days, weeks or several months. 90% do not make it to their first birthday.  Infants born with Trisomy 18 have many serious health problems involving most of the organ systems.

 

She very gently told us that she suspected our baby girl had Trisomy 18. I can remember so clearly sitting on the couch as she told me that she believed our baby had Trisomy 18 and that it was “incompatible with life.” She was telling me this child inside of me was going to die. As I began to cry, she said more than likely this was due to my age. My world began to fall apart.

As our visit ended with the counselor, we went on to have the ultrasound done. As the first tech began looking at her heart, she seemed stunned and after about 20 minutes, she left and got another tech, asking her to take a look.  I thought maybe the first tech was new at this and needed to get somebody else, but as 2 more techs came in for a total of 4, my husband and I  realized that Olivia’s heart was very out of the ordinary and was causing quite a stir. Another

tech asked our permission to come in and look. Finally, the last tech to come in was very knowledgeable about the heart and had done work with pediatric cardiologists in the past and knew what to look for.  My husband finally asked why all the people?  She said it wasn’t every day they saw something like this and it was a learning experience for them.  We were beginning to understand how serious her condition was.

 

After she did her measurements and talked with us, she called the specialist in to look and almost immediately she had the pediatric cardiologist called and told to come over as soon as he could. He could not get over to us for an hour to an hour and a half, could we please wait.  He arrived sooner than he had anticipated and we began another round of ultrasounds. 

 

He took his time looking at her heart and doing several echocardiograms and asked us all kinds of questions. About one hour later, he and the perinatologist sat down with us and explained what they had found. The cardiologist went first as he drew diagrams of a normal heart and of Olivia’s heart. He explained she had 4 separate heart defects which included a VSD, the left side of the heart was smaller than the right, excess tissue at the wall that separates the right and left side which we could actually see flapping on the ultrasound, a thick aortic valve that was turned in a way it shouldn’t have been, and abnormal hepatic drainage. He explained these defects were correctable at birth with surgery but, if she did indeed have Trisomy 18, that would change the course of treatment. He talked with us at great length about pediatric heart surgery and how often these surgeries had been performed and answered all of our questions.

 

Then it was the perinatologists turn and she very gently and compassionately gave us the other side of the story. She began with her findings on the ultrasound. Aside from the heart defects, Olivia did have a growth lag. Her hands were clenched and displayed overlapping digits which rang in my ears for many weeks to come. These were markers for Trisomy 18.  She said that the complex heart defects, the presence of the CPC and the clenched fists were all markers of Trisomy 18. She continued on with the outcome of this diagnosis which is “incompatible with life” and she explained why, all the same information the genetic counselor had shared with us earlier. The only definitive way to know for sure is to perform an amniocentesis which I refused right away. She said that was fine, but if we changed our minds and decided to have an amnio done, they would be glad to do it at any time.

 

We cried, we asked questions, and we cried again. These two doctors were wonderful and were very sensitive to our emotions and all of our questions. They took such great care of us and spent a long time talking with us. They seemed to be truly concerned with us and our baby and didn’t treat us as just another patient. They treated Olivia as our baby, not a mistake that we could just get rid of. She told us when we got home and began researching on the web about T18, we would come across stories about children living with T18. She encouraged us to bring the stories to her and she would explain each situation to us. These were the exceptions and were rare.

The Story Continues:  Telling Our Children