Maria Isabella de Jesus "My Story"

Isabella's story began since she was in the womb. When she was 4 month's old gestational age, she was diagnosed with a severe case of spina bifida, at T9-T10 level. She was also diagnosed with kyphosis, hydrocephalus, Chiari II malformation, and club foot.

All those terms seemed so frightening and unknown at that time. At that point we did not count with any kind of support. In fact, our OB-GYN seemed reluctant to offer options or to refer us with other doctors. So my family and I began this journey on ourselves. Me began investigating and we learned many things about spina bifida and its options. We then changed to our current OB-GYN Walter Mendieta. Dr. Mendieta was such a blessing during these difficult time. The fisrt time we met him, he was very caring, but what I like best about him was his faith in God.

We began investigating options with Dr. Mendieta. There was an option of operating her when she was still inside my womb. The surgery was being carried out at a research level so those babies who qualified had 50% chances of getting the operation while still inside the womb, and the rest of the children would be operated until after birth.

God wanted Maria Isabella not to participate in this reseach because since she had kyphosis (outward curvature of the spina) she was automatically denied participation. I felt so sad. Sometimes I think that if she would have gotten the operation she probably could have walked without the use of orthosis. God knows why he let this happened.

We were then looking for options in Costa Rica and Miami. Many people led us to the one same doctor in Costa Rica, Dr. Eduardo Huertas. We are so glad and grateful that we found him. He is one of the best doctors I've ever known. Before being a doctor he is a human being.

We made a trip to Costa Rica a couple of weeks after my mom talked to him about Isabella's case to meet him. I was so nervous. I didn't want to listen to all the bad things my daughter would go through in her journey with spina bifida. Doctors often only share the worst case scenario.

So when we met with Dr. Huertas he directly told us that we had two options, either to terminate with the pregnancy or to coninue with it and assume the consequences.

We agreed on option number two. This is when he began to talk to us about a boy name Luis Felipe who was born with spina bifida 4 years ago at that time. He insisted that the quality of life of these children depended mostly in how the familiy managed the situation. This included therapy, therapy, and more therapy. That same day we had the chance to meet with Luis Felipe. He was such an inspiration to us. He was already walking with RGO and was starting to move his legs. That moment when I saw him made me feel so hopeful.

We also had the chance to meet Eugenia, a physical therapist at CIMA San Jose Hospital in Costa Rica. She really did filled our lives with so much hope and faith. I still remember her words: "With love and hard work, these children achieve amazing things". I took her words and recorded them in my mind. And that is what I have been trying to do for all these years.

Anyways, we made all the plans for Mari to be born in Costa Rica. My due date was at the end of January, but we had to travel to Costa Rica just before Chrsitmas as was suggested by Dr. Urcuyo my OB-GYN in Costa Rica. It was the saddest Christmas ever. We felt lonely, but what was most important was that we were together. It was dad, mom, mimi, Marce, and my husband Roger. On Christmas Eve, we ate Rostipollo.

Maria Isabella really had plans of her own and I started having contractions on the night of January 5th 2004. All doctors were called and she was born by C-Section on January 6th, 2004 at 12 am. I was so worried. My strong brave mommy was the only one present at that stressful moment. My husband Roger could not be here during the birth because the birth got to us unexpectedly and Roger was working in Nicaragua. He arrived the following day.

I was so afraid to meet Isabella. But then came our Angel Eugenia Paris the physcial therapist at CIMA San Jose Hospital. She made me sit down on a wheelchair and took me to see my daughter. She was the most beautiful little angel I had ever seen. I fell in love with her, but was still afraid of her. She had already gone through her spine surgery and she had a wound covering almost all her back. She was on a respirator because she could not breathe on her own.

Maria Isabella spent a few more days on Neonatal Intensive Care Unit then Dr. Huertas moved us to a regular room. We stayed at the hospital a whole week before leaving to the ApartHotel. When we left the hospital it wasn't the usual feeling when mothers go home with their healthy baby. Of course we were happy to go home because that meant Isabella was fine, but I still felt that feeling of loss so deep inside of me.

So we went home and I felt I had to be strong, I couldn't let my mommy assume a responsibility that was mine. Of course she was always there to support me. And at the beginning she was willing to bath her, but I said I would be the one bath her. First, nurse would come home to bath her. But after a few days it was me, mimi, and Margarita who did the job.

I remember that what was really hard to me was not being able to carry her on my arms. We could not hold her delicate body because besides the spina bifida she had her kyphosis corrected; so she needed to be on a flat surface at all times. Finally we had a cast done for her and then we could carrry her. I felt so relieved!

Maria Isabella's kyphosis returned, but Dr. Tidwell, the orthopedic surgeon said that we could sit her up and that surgery would be needed until the bone would brake through the skin.

Isabella was also diagnosed with craniosynostosis. This means one or more sutures of the skull fuse together earlier than they are supposed to. So an operation is needed to separate the sutures and allow the brain to continue its growth normally. This is donde between 3 and 6 months old. Hers was done at 6 months old. This was a long delicate surgery. There were two doctors involved, the craniofacial doctor which would do all the reconstrucion and the neurosurgeon in charge of opening the skull and protect her brain during surgery.

I could infinately keep writing about her. But most of the rest of her story is on postings under Maria Isabella.