Musings of a Marfan Mom

Vittoria’s Story

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Today I am honored to feature my friend Valeria. I found her blog via Google Alerts a couple of years ago, a few months after her daughter, Vittoria, passed away from complications due to Marfan syndrome. Vittoria’s story continues to touch people thanks to her mother’s writings and I am humbled that Valeria is sharing part of Vittoria’s story here today.

Eleven years ago, our sweet daughter Vittoria was born. Her due date was on August 21, but I guess she needed a couple of more days to make her grand entrance in our life, and what an entrance she made indeed. My pregnancy with her had been pretty uneventful, except for a couple of times when in my eight month I went in preterm labor. Thanks to a couple of shots, things settled down and they sent me home. (Back then I didn’t really know why I went into labor, but years later I was told that eating several black licorice wheels may have caused our baby’s poor little heart to beat frantically and go in distress).

On August 23 at about 7 am I started having some contractions pretty close to each other, so we decided that it was time to go to the hospital. I was excited and kinda scared, but I was so ready to meet our baby girl for the first time. After several hours, they broke my water and I started pushing (with an epidural of course!). After a couple of hours, our baby girl got stuck in the birth canal and her heart went in major distress. They decided to do an emergency Cesarean section. I was game for anything, as long as my baby was ok, I would have done anything, so who cares if I was unable to have a natural birth? Anyway, after receiving a spinal anesthesia I was wheeled into the operating room. I remember getting prepared for surgery, James by my side with his scrubs on, I remember the doctors’ voices and then the most beautiful sound in the world: our baby’s first cry and that’s pretty much it, I was out like a lion.

On August 23, 2001 at 5:46 pm our baby (still without a name) was born in Price, Utah. She weighed 6 lbs 5 1/2 oz and she was 21 inches long. She had tons of dark spiky hair and an angry look on her little face.

I’m telling the rest of the story of this day as James told me later.

So, as soon as our baby was pulled out, her awesome pediatrician, Dr. A noticed several things that made him go on high alert: besides the very loud heart murmur, our baby’s foot was completely pulled back against her shin, arms and legs were very thin and her fingers and toes were very long, a condition known also as Arachnodactyly (“spider fingers”), in which the fingers are abnormally long and slender in comparison to the palm of the hand and also her arms and legs could not stretch without causing her excruciating pain. I guess the room in my belly was so limited that her long skinny body couldn’t move much, leading to the atrophy of her muscles.

Even though he never had a patient with Marfan syndrome, on a hunch the doctor thought our baby might have it, so he called another hospital. James told me he kept watching the doctor as he was on the phone with the hospital and consulting a medical book while looking at our daughter. Some time later, I remember slowly waking up to find James by my side with tears in his eyes. He grabbed my hand and told me something was wrong with our baby. That felt like a knife in my heart. We needed to decide a name right away before they could put her on the medical plane that they were sending down to pick her up and take her to the other hospital.

WHAT?? What in the world was going on? Why was this happening to our baby? Why us? Have we not done all the right things, healthy eating, no drugs and alcohol and always prayed for a healthy baby? Didn’t I go to all the doctor’ appointments and took care of myself like never before? Is this how our life of first time parents was going to start? I just couldn’t understand…I was devastated.

A little bit later, they brought in our sweet baby girl. She sounded and looked so angry, but her little cry was also reassuring, I knew that she would be mad enough to fight anything and anybody.

We decided to name our girl Vittoria, which is an Italian name with Latin origins that means ‘Victory’. And she would have lived up to her name until the very end and beyond that too.

The first time I held Vittoria-I have a puffy and blotchy face because of how much crying I did.


James holding Vittoria


Our families came in and visited for a few minutes, James’ parents and mine and close friends held Vittoria until the nurses came in to take her away. The ambulance was ready to take her to the airport where the medical plane was waiting. They put Vittoria in an incubator on top of a stretcher, strapped her down and brought her in my room so I could say goodbye. After her daddy gave her a blessing they took her away.

This photo tears at my heart evey time I see it.


They might have as well ripped my heart from my chest, I don’t think I can even describe how I felt, it was horrible not being able to go with them, not knowing if I was going to see her again. Fortunately in the midst of all this, my James was able to go with her on the plane. I stayed at the hospital for the following 3 days, with my parents always at my side, my mom slept at the hospital by my bed and my dad would walk every day from our home to the hospital to see me. During one of those 3 days, my parents went to Children’s hospital with our neighbor Amy to see James and Vittoria. The day I got discharged I got a call from James telling me he was on his way to pick us up and take us to the hospital. That was the longest drive ever, and by the time I was wheeled in Vittoria’s room I was a basket case, I couldn’t stop cry and shaking. My baby was still alive and to me she looked so beautiful.

Working on that tan!


During our stay at Children’s, we met with several doctors to discuss Vittoria’s case. We talked to cardiologists, geneticists, nurses, orthopedic doctors, pneumologists, ophthalmologists and even social workers and to our utter disbelief and despair, they told us that Vittoria had Neonatal Marfan Syndrome. Until that moment, we NEVER heard of this syndrome, what was it? How did our daughter get it? What were we going to do? So, all the features that Vittoria had at birth were signs of this syndrome, which we researched and on the National Marfan Foundation website found out that:

Marfan syndrome is a disorder of the connective tissue. Connective tissue holds all parts of the body together and helps control how the body grows. Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body.

Marfan syndrome features are most often found in the heart, blood vessels, bones, joints, and eyes. Sometimes the lungs and skin are also affected. Marfan syndrome does not affect intelligence.

About 1 in 5,000 people have Marfan syndrome. This includes men and women of all races and ethnic groups. (www.marfan.org)

Well, now what? After 6 endless days at Children’s, among visits and consultations, we were given the ok to take Vittoria home. And our beautiful crazy humbling journey started.

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9 Comments

  1. I loved hearing Vittoria’s birth story on her birthday, Valeria! She is such a beautiful angel and I know she is watching over you and your family. I think of both of you often. Many prayers and lots of love to you today!

    [Reply]

    Valeria Reply:

    Thank you Jen for your love and much needed prayers.
    Maya was so very nice to post it on Vittoria’s birthday and share it with the Marfan community and not. That in itself is a gift to us.

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  2. Other than my friend Maya, I too had never heard of Marfan Syndrome. Thank you both to Maya for posting the story, which brought tears to my eyes, and also to Valeria for sharing her daughter’s story. Happy Birthday Vittoria!

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  3. Hi Valeria,

    Your story touched my heart deeply. My little girl, Callie, passed away due to neonatal Marfan syndrome also. She was only two days old. I hope that you are healing ok. Thank you for sharing.

    xoxo
    Kristin

    [Reply]

  4. What a beautiful little angel! Thank you for sharing your story with those of us in the Marfan community. I’m sure you have been thinking of her every minute of the day . . .

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  5. Nice post. Thanks for sharing! EDS babies generally don’t look so different at birth. This was informative …. and touching!

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  6. thank you so much for sharing! She is beautiful!

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  7. I’m so glad to hear your story! My daughter was born on March 20th with neonatal Marfan sydrome and is still currently at children’s hospital of colorado. She just had heart surgery last week and we are playing the waiting game to see if it worked. It is nice to have some hope. Your daughter is beautiful!

    [Reply]

    marfmom Reply:

    Hi Amber! I’m sorry for the delay in responding…I’ve had some blog/computer issues. How is your daughter doing?

    [Reply]

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