Sweet Lily Faith
Diagnosis: Turner Syndrome
By Lily's Mother
Our journey began on January 10th, 2008. That was the day that my husband and I found out we were pregnant with our first child. We were so
excited. I have wanted to have children my whole life and I was thrilled that it was finally happening. Unfortunately, our excitement was soon
crushed. At our ultrasound at 8 1/2 weeks, our baby had no heartbeat. It was absolutely devastating. I knew this happened to many people, but I
never thought it would happen to me. I had a D&C the following day. My husband was wonderful and took very good care of me. With the support of our
wonderful friends and family we were able to grieve this loss and move on.
About 5 months later, we found out we were expecting again. I took the pregnancy test alone and then quietly handed it to my husband with a bright
pink line showing. I think we were both in shock because we really didn't say very much. We were both just grinning from ear to ear. Because of our
earlier loss, we decided not to tell anyone until after our first prenatal visit. It was so hard keeping such a big secret. I ended up telling my
sister a couple of days before my appointment because I just had to share my joy with someone. I think she was just as excited as I was.
As we sat in the office waiting to have our first ultrasound. My stomach was in knots. I was so nervous that the same thing would happen all over
again. We went into the ultrasound room and, after just a few minutes, we saw our baby's little heart beating. It was so amazing. This time I was
crying tears of joy. All I kept thinking was, "this is it, we're going to have our baby." Over the next few weeks we started spreading the good
news to all of our friends and family. Everyone was so excited for us.
At our 12 week prenatal visit, the doctor asked us about the AFP testing and I declined it without batting an eye. I was 28 years old and didn't
feel like I had any risk factors that would constitute me getting the tests done. Besides, the test results wouldn't change anything. We were having
this baby, no matter what. Or so we thought...
The next few weeks went by without a hitch. My baby bump began to show. I was feeling pretty good, just a little tired. I started buying some
maternity clothes and we began talking about baby names. I couldn't wait to find out if we were having a boy or girl. My husband and I didn't have
a preference. We just wanted a healthy baby (isn't that what everyone says.) We didn't know how truly important that statement would become.
Because I am slightly impatient, I couldn't wait for my 20 week appointment to find out if I could start buying blue or pink. So, my OB let me
schedule my ultrasound at 18 1/2 weeks to find out the gender. It was October 22nd. I will never forget that day. My husband picked me up from work
and we met my mom, sister, grandma, and mother-in-law at my doctor's office. It was truly a family affair. Everyone wanted to be there for this
exciting moment.
The ultrasound began and there, once again, was our baby's little heartbeat. I breathed a sigh of relief. We saw hands and feet and our baby's
sweet face. Then as the ultrasound technician was taking a measurement of our baby's heart, she stopped and looked and me and said that she was
seeing something abnormal around the heart and lung area. She pointed to a black area on the screen, located around the heart. She said that meant
that there was fluid around the heart. I began to cry. I couldn't believe this was happening. Something was wrong with my baby.
The technician continued with the ultrasound. She was measuring all the baby's limbs and told us that the baby was measuring exactly 18 1/2 weeks.
She also informed us that our baby's legs were crossed so we wouldn't be able to tell the gender. She completed the ultrasound and said that she
was going to have one of the doctor's come in and take a look. As she left the room, I just layed there in disbelief. My husband was holding my
hand and my family was standing all around me. My mother-in-law spoke up and said she thought we should pray. So, hand in hand, we prayed. We
prayed that our baby was OK, that the doctors would give us answers, and that we would be able to deal with the answers we got.
As the doctor began the ultrasound, he started pointing out all the problems he was seeing. There was a significant amount of fluid around the
heart, so much that he wasn't able to visualize the lungs. There was also fluid in the belly and a large cystic hygroma on the base of the neck. He
went on to tell us that these findings were leading him to think that our baby had a chromosomal abnormality. We would need to have a more detailed
ultrasound and tests to confirm what was truly going on. He did tell us that the findings were very severe and that it was likely that the outcome
wouldn't be good. We were instructed to go home and he would call us with the appointment to meet with the specialists. Once the doctor left the
room, so did the rest of my family. My husband and I just sat in that room crying and holding each other. Our lives had been turned upside down in
the matter of a few minutes.
The next day we went to have another ultrasound which was done at our local hospital. We spoke with a doctor who has more experience with high
risk pregnancies. He joined in on the ultrasound and confirmed the findings that our doctor had seen the day before. He told us that he was surprised
that the pregnancy had continued this long with the abnormalities that were present. He also told us that the chances of this pregnancy going full
term would be very unlikely. He suspected that our baby would demise within a couple of weeks. I couldn't believe this was really happening. It felt
like a terrible nightmare that I would eventually wake up from.
Next, we met with the genetic counselors. They were so caring and sympathetic to our situation. They carefully began explaining to us the
different chromosomal problems that our baby may have. Then they gave us our options. Unfortunately none of the options we had would give us the
healthy baby that we had so hoped for. We could wait and see what happened, which meant coming in weekly to have ultrasounds to see if our baby's
heart was still beating or, our other option was termination. When the geneticist mentioned this, I was caught a little off guard. I couldn't
believe I was having to even think about termination. I would never in my life choose to end a life, especially the life of my child. But, as they
explained to us, this was a special circumstance and is considered a medical decision based termination.
They also offered us an amniocentesis to find out exactly what abnormality we were dealing with. We decided to go forward with the amnio and then
make our decision after that. Luckily they were able to perform the amnio that day and we would have the preliminary results within 24 hours. After
the amnio we went home to wait. My husband and I talked about the upcoming decision that we had to make. We didn't have much hope of good news from
the test results due to the grim prognosis the doctors had given us. The bottom line was our baby was very sick.
The next evening around 5pm, I called the genetic counselor for the test results. She delivered the heartbreaking news that we were dreading. Our
baby did have a chromosomal abnormality. Based on the preliminary results, they were confident that we were dealing with a baby with Turner's
Syndrome. This meant our baby was a little girl. I began smiling and crying at the same time. I wanted a daughter so much. This news was bittersweet.
Although Turner's Syndrome was a disorder that some children can live with, our little girl's abnormalities were too severe. Even if she survived
the pregnancy she would die soon after birth. How could I continue on with a pregnancy that would have a tragic ending, no matter when it happened?
Once this news sank in, my husband and I knew what decision we had to make. We decided to go thru with the termination. We met with my OB the
following week and let him know of our decision. The scariest part was that, unlike our previous loss where I was put to sleep and once I woke up
it was all over, this time I would have to go thru labor and actually deliver our baby girl.
I was admitted to the hospital the following day at 5pm. They began the induction at 8:30pm and after a long sleepless night and 3 rounds of
cytotec, I delivered my first born child. My husband was at my side the entire time and we also had the support of our moms and my sister. We had
decided that we wanted to see her and hold her once she was born. I felt like if we didn't do this, we would always wonder and have regrets later.
Through this whole process, that was the one thing I didn't want. The nurses that took care of us were absolutely wonderful. They cleaned her up
and dressed her in a little pink hat and dress and wrapped her in a tiny pink blanket.
When I saw my daughter for the first time, I felt at peace. She was more beautiful than I could have ever imagined. She was so tiny. She fit in
the palm of my husband's hands. Even as small as she was, I could tell she had her daddy's nose and mouth. We could also see that her little hands
and feet were swollen and slightly malformed. This was one of the effects of Turner's Syndrome. Looking at her at that very moment confirmed the
decision we had made. We did this out of pure love for our daughter. We did not want her to experience any pain or suffering. Knowing that she would
only know love, was the one peace we had.
My husband and I decided to name her Lily Faith. "Lily" means "beautiful and innocent" and "Faith" because of our faith in the Lord that He would
get us thru this difficult time. After spending some time with Lily, we introduced her to her grandmothers and her aunt. I didn't want them to miss
out on the joy we had experienced by seeing and holding our daughter. We decided to have her cremated and we planned to plant a pink dogwood at our
home and spread her ashes in the soil. So, every time the dogwood blooms we will be able to think of Lily and the impact she has had on our lives.
We also planned a memorial service at our church to honor Lily and share with our family and friends how this little angel had changed our lives.
Doing these things has given us some closure and has helped us begin to heal.
It has been only a month since we lost our baby girl. Everyday does get a little easier, but it doesn't make the hurt or loss go away. My husband
and I plan on having more children. It is my dream to be a mother and I know that God has a plan for my life and I'm confident that he will fulfill
that dream for me. I have been doing a lot of reading and praying to help find comfort on those hard days. In an inspirational book entitled
"God's Love for You," I found a poem called "Dark Shadows" that has helped me make peace with our loss.
Sickness and sorrow, come to us all
but through it we grow and learn to stand tall.
And the more we endure with patience and grace
the stronger we grow and the more we can face.
And the more we can face, the greater our love,
and with love in our hearts we are more conscious of
the pain and the sorrow in lives everywhere,
so it is through trouble that we learn how to share.
