Sara's Story
Diagnosis: Turner Syndrome
By Sara's Mom
March 25, 2006 was a bright and sunny day. It was not warm, but not cold either. My appointment with my OB for our big 20 week sonogram was at
10:30, so my husband and I went to Panera for breakfast. I had a bagel and a hazelnut coffee, this was the first caffeine I had since I found out I
was pregnant. We had heard that drinking caffeine would make the baby move around and we would have a better chance at finding out the sex of the
baby. We arrived at the office and settled in. We talked to a lady who came all the way to Centreville from Fredricksburg to deliver her babies. A
man came rushing in, and a few minutes later he left with a woman who was in tears. Scott and I looked at each other and said "Thank goodness that
isn't us."
The OB called us back and began the ultrasound. He said that the heart rate was 220. He said he could tell there were some abnormalities, but he
couldn't say for sure what they were. He was going to send us to a radiologist on Monday to see for sure. I asked if there was any way we could
find out sooner. His basic comment was he could send us to the hospital, but they might not know for sure what was happening. He said it could be
as minor as a hiatel hernia, not a big deal, my dad and I both have one. In my heart I knew something was wrong.
I was in tears the whole car ride home. Scott knows how much I like Dairy Queen and took me. I got a blue raspberry Misty with ice cream. I, to
this day have not eaten another one; I barely ate that one. We went to my parents and told them. Babies R Us was having their baby day's sales, and
my mom thought it would make me feel better. I didn't want to buy anything but my mom convinced me. I had, had a dream a few days before about a
little girl in a purple and white dress. She had big blue eyes and was beautiful. There was my dress! Hanging on a rack, I had never been to this
store before. I took this as a sign everything was going to be okay. I still felt the unease, but I began to let myself believe that it would work
out. I wanted to go home and just be with my husband. But I had a long standing Saturday night game night with some friends. He convinced me to go
and have fun.
Sunday we went to Scott's mother's house and tried to just have a normal day, but I was on pins and needles the whole time. Monday I went to work
and told my boss what was going on and that I would be going for another ultrasound. She assured me that she was positive everything would be okay.
You know what? By this point I almost believed it.
My husband and I went to the radiologists. I went back first and the nurse asked if there was a heartbeat. I said yes. She said okay, well we are
going to rule out fetal demise. Then my heart dropped. The tech comes in with Scott and starts the exam. We told her we didn't want to know the sex
if there was a problem. Not a word from her. She is totally quiet and I can't even look at the screen. The doctor comes in. He is very quiet and I
am in tears. He wipes my belly and tells me to get dressed.
We meet with him in the conference room. He tells us that he has placed a call into my OB. I ask him to please tell me what he saw.
"I am sorry your baby is not compatible with life."
My husband and I loose it. He explains to us about the lack of amniotic fluid, the heart malformation, and the cystic hygroma. He says he had
never seen a baby with these problems survive and rarely make it full term. Right now he was just going to label it "Fetal Demise." We both start
to cry and we compose ourselves, I don't want to upset any of the other moms in the waiting room.
We called our parents and my husband is crying as he calls his mom. We go back to work and explain to my boss what is happening, as far as we
know it any way. We go to my parent's house and have dinner.
The next day we talk to my OB and we decide the best thing to do would be to terminate the pregnancy. We scheduled it for Thursday March 30, 2006.
I have always been pro choice, but never thought I would do it. Tuesday night my Sister-in-Law comes over and so does my brother. It is almost like
we are having a wake. My mom asks if I would like a glass of wine, and I turn her down because I am still pregnant. No matter what the outcome, I
still need to protect my baby.
Wednesday I scrub my house from top to bottom. Our front room had been the collecting area for the things for the baby. My mom comes over and
helps me pack it all away. I look at the white dress I bought for the baby, and I want to keep it out. I can't bear to pack it.
Up to this point, Scott and I had decided we did not want to know the gender and we weren't going to name the baby. As we were getting ready for
bed he asks "Can we name the baby?" I am shocked because normally he is not like that. I say okay. The girls name comes quickly "Sara Faith". We
picked the name for it's meaning not for what it actually was. Sara means "God's Princess", and Faith because we had faith that everything would be
OK. I can't even remember the boy's name, and I actually think we never settled on one.
We went in to Fair Oaks hospital at 6:00 am. There were two other moms (full term moms) who were chattering about taking their babies home. We
go to register and the lady is very nice and then she says "So is your nursery all set up?" Oh no we didn't do that, was my response. "Oh I thought
you were having a baby." Ouch...
Kathy is our first nurse. She gets us settled in our room. There is construction in the room next door. It is really noisy. I ask if I can move.
She says sure, they will try and put me in a room away from all the other mothers. The day passes uneventfully, I am not dilating at all, nothing
much is happening. I have decided I want my baby baptized, I am not sure why, it just seemed right. I ask the night nurse about this, and she
informs me she won't do it because she does not believe in it.
I wake about 5:00 am, because my epidural is wearing off. I buzz my nurse and a nurse at the station says my nurse will be in shortly. She comes
in almost an hour later and informs me she has been taking care of the women having babies. That REALLY upsets me and I call my parents to come.
Friday passes uneventfully. Then Friday evening my OB decides to use a drug called Cytotec. She inserts it directly into my cervix. She says if
this does not work she will have to do a D&E. I tell her I would rather have a c-section.
Shortly after that I start to feel really weird. My husband gets my nurse and she takes my BP; it has crashed to 90/60. Then I tell them I REALLY
don't feel good. My BP is now 50/30. I don't remember much, just that I got put oxygen and they wheeled in the crash cart.
The nurse (Robin) offers me some Vicodin; she says it may make it easier on me mentally when I deliver. I say yes, okay. I begin to feel a lot of
pressure. I tell them I think something is happening. She checks and yes the babies head is where it needs to be.
For the first time I start to panic. If I can keep the baby inside of me, it will be okay. I just can't push; I need to keep the baby inside of
me. If I keep it there this won't be real. I start to panic, this can't be real; my baby can't be dying. I start crying "No I can't push, I can't!"
Sara Faith K. came into this world silently at 12:18 am on April 1, 2006. The nurses and doctor whisked her away. After a few moments, my husband
brings her in. He asks if I want to hold her. I say no. I am afraid of how early she is I will think she is ugly. Then I changed my mind. I needed
to hold her. My mom goes and gets my husband and he brings her back in. He gives her to me.
"I am sorry Sara. I love you so much, we want you so badly." I kiss her good bye and give her back.
After everything is done, I am finally able to sleep with the help of Ambien. When I wake up they say I can take a shower but they need to leave
my IV in. They put a plastic glove over my hand but tell me not to get it wet. The nurse asks if I want her help. Mr. Grown up says that he can do
it. I get in the shower and start to cry because I can't wash my hair. As silly as it seems now, I was so upset about that.
"Honey, let me do it for you." My husband washed my hair for me. It was not a big thing but it was huge to me.
Later in the morning my husband and my brother wheel me outside. It is the first really beautiful spring day. Daffodils have always been my
favorite flowers, they were not in bloom when we checked in, but today there were hundreds of them. It almost seemed like it was her way of saying
"mommy I am still here."
Later that day I get up and walk around the maternity floor. It is probably about 8:00 pm, Mr. Grown up is sleeping I just can't sit still any
more. I am outside one room when I hear a newborn crying, what a sweet sound.
"Will someone shut that baby up," a new mother said that about her baby. I start shaking. Doesn't she know how lucky she is? I would give my life
to hear that sound. I go back to my room in tears. I need to go home, I can't stay here. We tell the nurse, and she calls the OB. They were going to
discharge me on 4/2, so they went ahead and sent me home.
We wait on pins and needles for the results. On April 26th her autopsy is back. We lost her to Turner's Syndrome. Our geneticist said it was the
most serious case with the most complications that she had ever seen.
