MY STORY: AN ONGOING ADVENTURE WITH NO EXPIRATION DATE!
Deirdre Valeria was born on August 17, 2007 in San Germán, Puerto Rico. The event was at the Hospital La Concepcion at 8:30 pm. She weighed 8.15 pounds, and had no complications. The doctors found her healthy and strong. She magically captured the hearts of many with her intense stare and sweet and friendly mood. Since birth she was very social, and she always liked being the center of attention.
The first major event in Deedee's life was her baptism in October 21, 2007. This took place at Our Lady of Fatima Church in Mayaguez, chaired by Father Edwin. The godmother was Maria Cotto and the godfather was Steve Sepulveda. After the ceremony, we had a little family reunion at our aunt's house. There were balloons, cake, music... and she was regal in her white long traditional baptism gown!
His first Halloween came, and following the example of her mother she dressed like a little devil. Her father dressed as a pirate and her godfather like a zombie. It was fun taking pictures around the house, waiting for midnight. Our house was on top of a mountain in the countryside, so the view at night was breathtaking! Deedee soon made it clear that she was exhausted, because through it all she simply slept.
We celebrtaed Deedee's 1st Thanksgiving Day with a family reunion at our home. We had the traditional turkey, a nice dinner, guests from both sides of the family, and a photo shoot. Our goal was to establish this day and Christmas as new traditions for our families. We never imagined that these would be the only first activities we could do at home and with them
.
Christmas came, and we prepared to celebrate Deedee's first Christmas... Then, in December 17, our lives changed completely.
Deirdre had a respiratory arrest, after which she was hospitalized at the Hospital San Antonio de Mayaguez. Both lungs collapsed, and doctors gave no hope that she would survive. She was intubated, receiving constant oxygen, and with three drainage tubes in the chest.
On Christmas Day, just ask Gd for one great gift: Deirdre's life. Many people from around the island joined us in prayer and gave us support and hope.
On January 3, 2008 we got the confirmation that our baby suffered from Werdning-Hoffman, or Spinal Muscular Atrophy Type 1. The neurologist said that SMA is a fatal genetic disease, and our baby would not survive. It was a hard blow, and the neurologist who gave us the news was neither polite nor compassionate.
That night we wrote everything that had happened in the blog (online diary) that Deirdre had on the Internet since before birth. Within two days of mentioning SMA in the blog, families from around the world left messages on what to do and where to seek help. Thanks to this fast response we got the facts of what options exist to deal with this disease. Every second counts, and we were lucky the right information came to us. We will forever be grateful to Brad Fisher and Nate Lee, our main anchors of support, and the people on SMA Chat Support.
Thanks to these SMA families we found that for SMA there are mainly three experts in the world: Dr. Bach, Dr. Swoboda and Dr. Schroth. We contacted them, and the last two doctors tried to help us fight the case in Puerto Rico. Dr. Bach simply told us to bring Deedee to his hospital, which at the time seemed impossible. All the information that we gave to our hospital fell on deaf ears. The doctors did not want to follow the protocol for non-invasive because they simply did not believe in it. We were transferred to the Children's Hospital Pediatric Intensive Care Unit in San Juan on January 8, 2008.
In San Juan, Dr. Diaz helped us and tried to follow the non-invasive protocol. The big problem was that since they had not done this before, everything was a test of "trial and error" and they were not faithfully following specifications... so the method constantly failed. There were many inconsistencies between the therapists and the doctors of the various shifts (some followed directions, some did not).
We accepted the g-tube and fundaplication operation even if Deirdre was extremely weak as Dr. Swoboda advised us it would help prevent reflux, would give us time, and she would need it anyway. The hospital wanted to do tracheostomy, but we opposed this. We wanted to take Deirdre to an expert before taking that big step.
The following days were filled with constant fighting and bad news about services and people not doing their job. We had special permission to visit from 10 am to 9 pm (in Puerto Rico they do not allow parents to stay with their children in intensive care). While we were there we monitored everything, but we would go home at night feeling terrified because we knew there would be inconsistencies in treatment and services during the night shift.
Everything was hard and uphill. We went to meetings to get help, and we had to fight with government agencies that are supposed to help in extreme cases like ours... We also had to fight so insurance would cover everything (and they did). We knew we had to take Deedee to Dr. Bach's hospital if we wanted to give her the chance to live. Why Dr.Bach? His hospital was the closest to us, and he actually have all the knowledge to battle SMA as he started it all.
Services in Puerto Rico for children with SMA are very limited, especially because our professionals do not want to listen or to try new things. It's sad, because our professionals are the best and we have so much technology... but it's true. Many years serving the public has left them jaded and disconnected.
Thanks to a very special volunteer from Guanica, we did several activities to raise funds for the cause of Deirdre, so we could bring her over to US Mainland. We conducted a sports tournament, and various donation collections. Vocational Rehabilitation Administration and J&J Cordis (our employers) helped us a lot during this process. We requested the help of various public and private agencies. After Catastrophic Funds denied helping us four times (and it was their obligation by law to help!), they finally gave us an air ambulance to take Deirdre to New Jersey.
Deedee was transferred on March 28, 2008 to University Hospital in Newark, NJ. Deirdre was intubated and went into a state of shock when she got in the plane... She did not even blink. The nurse suggested to take her in my arms, which I did (after 3 months of not being able to hold her). Deirdre kept on not blinking and being terribly still. That flight seemed terribly endless.
Deirdre was extubated to bi-pap mask on the third day after she arrived to the University Hospital Pediatric Intensive Care Unit. Afer seeing her, the Dr.Bach told us that she was one of the best cases he has seen, and non-invasive method would be very positive for her. Although the mask was always a problem since it was a little big for her, that did not affect the function of it. The PICU doctors were amazing, especially Dr.Nevado. Two weeks later Deedee was discharged on April 14, 2008.
We had to stay in New Jersey to give our baby the best medical treatment for her condition. Everything has been tough for us because we were alone in a new place. We left our jobs, our families, our friends, our daily lives. It was not easy, but there was no time to think much about it... Everything happenned so fast... We faced the option of giving our baby girl a chance to live or to do nothing... The answer was simple, and although the actions to achieve this goal were very difficult they were not impossible. We witness that there is no glory without sacrifice, and that with God everything is possible.
Today, Deedee lives. She receives constant paliative care and therapies. We know our role in life is to provide Deedee the tools to grow and live without limitations. Deirdre is a diva. She is very intelligent, very alert, and very willing to really live.
God constantly works miracles in our lives because of her, every second. God has given us a great responsibility and a great blessing in our Deirdre Valeria. And she has no expiration date, so our efforts and faith goes on. Treatment and a cure are around the corner. We will make it!
EVERYTHING ABOUT A DIVA
BEWITCHING GAZE
DAILY CARE HANDBOOK FOR DEIRDRE MEDINA
This manual describes the daily care for Deirdre Medina. This includes all therapies and respiratory issues, plus an appendix of supporting material.
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