"So take life for yourselves and for your seed" (Deuteronomy 30,19)
In the fourth month of pregnancy of my fourth daughter, Júlia, I discovered that something was wrong with the baby, and according to the genetic doctor´s opinion, it was probably a rare syndrome (tanatophoric dwarfism) and the baby should die right after birth, and there were also risks for me.
This doctor recommended an exam that would confirm this diagnosis by removing some of the amniotic fluid, and then I could ask for a legal authorization for abortion (in Brazil abortion in general is illegal, but in some cases, like this when there is the risk of death for the mother, you can ask for a legal authorization), because, according to him, "it´s not worthy to suffer with a pregnancy where the baby would die..." and I should think about the well being of my other three healthy children.
After praying and thinking a lot, I decided, with my husband, not to do that exam, because there was a risk that the exam could cause an abortion. Our daughter had a mission to fulfill and, even if that was really painful, we didn't have the right to interrupt her life, only to "avoid more suffering". It's impossible to avoid suffering, everybody suffers. We, as parents, have the mission to teach our children how to suffer and not try to prevent that they suffer.
The pregnancy continued with many problems and Júlia was born on November 8, 2007, after a very complicated delivery. She went straight to the ICU where the diagnosis of tanatophoric dwarfism was confirmed. At this same day, her godmother was able to enter for a few minutes in the ICU and baptize her. The doctors told us that she would die in the next days, but Júlia exceeded all expectations.
Those were months of a lot of pain, she suffered a lot. She had daily painful exams; she was only fed by probe, and for a long time she needed a tube in her throat to be able to breathe. Besides that, she had a fever that nobody could explain. All the exams were negative for infections and although the fever was high, her general state was always good, which greatly intrigued everybody that was involved in her care.
One day one of the doctors called me in his office to tell me that there wasn't any scientific reason for Júlia to be still alive after over three months, because there were no records of babies with her syndrome surviving such long time. The only reason that he could think of was the love that we felt and showed her, and that she felt from our family. This fact, according to him, had touched him profoundly as a doctor, and made him realize that is worthy to fight for the life, even if the prognosis is very bad.
On February 3rd 2008, with a special permission from the doctors, we could complete Júlia's baptism in the ICU, with the presence of a priest, her godparents and my husband and I. A few days after the ceremony, everybody could testify a great grace occurred: Júlia began to breathe by herself! She used just a small oxygen support and for the first time, the doctors were talking about the possibility of her going home. They were 15 wonderful days. We could take her in our arms, and as she was off the strong medication, she could interact with us and she even smiled.
After this time, Júlia got worse again, and stayed in the hospital another 15 days and needed the tube to breathe. Once more she was taken off of the tube, breathing by herself, and was able to stay the rest of the time with an oxygen support, sometimes with the oxygen hood, and sometimes with a nasal catheter.
5 months and 11 days passed when my husband and I were called to the hospital to receive the sad news that Júlia had gone to our Father of Heaven's home. According to the team that was with her that day, everything happened very fast. Her little heart simply stopped and the doctor couldn´t bring her back. She left in peace.
Even with all that suffering, our hearts are filled with joy from the few moments that we could be with her, and we are very thankful to GOD for giving us the privilege of being her parents. With Júlia, our mission as parents is fulfilled. We have a daughter in Heaven. With our other three children, we still have a lot to do, so they too, can be one day in Heaven with their little sister.
Our family has matured and united a lot from Júlia's life. The pain that we felt every day, the feeling of impotence before her suffering were huge, but we can't imagine our lives without experiencing hers.
Copyright 2014 Flávia Ghelardi