A Mom and her Family on a Mission to Congress

Marina and her parents Nikki & Geno Marasco

Next month, on June 19^th, a 6 year old little girl from Seminole, Marina Marasco and her parents will go before Congress in Washington D.C, to advocate for funding and pediatric research for All Children’s Hospital in St. Petersburg and other children’s hospitals. The family hopes to increase awareness for omphalocele (Pronounced uhm-fa-lo-seal) babies and research. Omphalocele is a type of abdominal wall defect in which the intestines, liver and occasionally other organs remain outside of the abdomen in a sac.

Marina one day old.

According to the Centers for Disease Control and Prevention (CDC) each year about 1 out of every 5,386 babies born in the United States each year is born with omphalocele. Many babies born with omphalocele also have other birth defects, such as heart defects, neural tube defects and chromosomal abnormalities.

Marina’s story began a little over six years ago when her parents found out that Nikki, who was 35 at the time, was pregnant with their first child. The results of the blood work and the amniocentess were not good and doctors recommend and doctors recommended the pregnancy be terminated. 

But the Marasco’s didn’t abort their child and this May 31^st Marina turns six. She will also graduate from kindergarten. A day some doctors in the medical field thought would never happen, and if it did happen certainly she wouldn’t have any quality of life.  After 21 surgeries at All Children’s Hospital, this little girl Marina is truly a miracle.  

 

When you see her and meet her, you can see she has a wonderful quality of life. Marina is just like other kids her age. She is in karate working on her orange belt, takes dance and is competing in cheerleading competitions. “We fought to get her here. We went through hell and back,” says Nikki. “I just couldn’t believe my obstetrician in Tallahassee when he said it was a death sentence. I just didn’t want to give up,” Nikki said.

During her pregnancy Nikki travelled from where she was living in Tallahassee to see doctors at All Children’s Hospital. Marina ended up being delivered six weeks premature and doctors at All Children’s delivered her. It was a rough few months because when Marina was born she not breathing and after her birth she was in a coma for five weeks and in the neonatal intensive care unit (NICU) for 10 months. Even though there were struggles Nikki knew Marina was going to be fine.

During the pregnancy, Nikki had been so angry at God asking Him. She wanted to know what she had done so wrong to make her daughter be the one to suffer? She said she had given up and lost her faith. She asked God for a sign that He existed and to tell her that her baby was going to be ok. The very next day Nikki says she got that sign she was looking for when the results from the amnio showed no signs of any other type of genetic abnormalities. They were all clear. “I asked God for a sign and knew it was meant to be. It was a long battle, but paid off.  I wouldn’t hesitate and do it all over again. I would go through the heartache the tears.”

Nikki believes what her daughter has been through has made Marina who she is. “She is a phenomenal little girl. She is very loving and kind.”  Nikki says Marina knows she is lucky to be alive. Marina still has 2 to 3 more surgeries and when Marina is about 8 years old she will get a belly button.

Marina's mom says with the right medical staff and a loving family, a child born with omphalocele can have a quality life and more. That’s why the Marascos are so passionate about bringing awareness to omphalocele and trying to raise more money for research to give other babies a chance at life.