Julia

A moving testimony about love and life

Julia: misión cumplida… Julia: you have fulfilled your mission Julia, du hast deine Sendung auf Erden schon erfüllt… Fotos: Ghelardi © 2008

BRAZIL. Luciano y Flavia Nunes Costa Ghelardi, – Some members of the Family Federation from Campinas, San Pablo – and their three children were happy when a new daughter was born into the family, but it was also a great sorrow when they had to return her to God after a few months. It is touching to see how this family could deal with Julia’s short life span. It can be an encouraging testimony for life, during these decisive times when many think in such a different way.

That is why Luciano and Flavia are willing to share their experience.

Julia: We celebrate life.

During the fourth month of our fourth daughter, Julia’s, prenatal development, we discovered that there was something abnormal about the baby. According to the opinion of the medical genetist, it was probably a rare syndrome, Thanatophoric dysplasia, and a form of skeletal dysplasia that is lethal in the neonatal period. The term thanatophoric derives from the Greek word thanatophorus, which means bringing death. Characteristics of TD include severe shortening of the limbs, a narrow thorax, macrocephaly, and a normal trunk length, and that the baby would die shortly after birth. There were also risks for the mother, and the doctor recommended a test of the amniotic liquid. If the diagnosis was confirmed, we could ask judicial permission for an abortion, since, according to him, "it was not worth suffering through a pregnancy in which the baby would die"...and we had to think about our other healthy children. We decided not to take the test, since the test itself could cause an abortion.

Our daughter had a mission to accomplish, and in spite of how painful it was, we did not have the right to interrupt her life, just to "avoid more suffering." Suffering is an impossible feeling to avoid. Everyone in the world suffers. We, as parents, have the mission of teaching our children how to suffer, and we should not try to prevent them from suffering. The pregnancy proceeded with many problems, and Julia was born on November 8, 2007, after a very complicated delivery. She was taken to an intensive care unit, where Thanatophoric dysplasia was confirmed. On the same day, her godmother was able to enter the intensive care unit for a few minutes, and she performed an emergency Baptism. The doctors predicted that Julia would only live for a few days. But the small Julia surpassed all expectations. There were months of much pain. She suffered very much. They conducted tests daily, she was only fed with a feeding tube and she had breathing tubes for a long time.

Besides this, she had an unexplained fever, since the tests were always negative for infection. In spite of the fever, her general state was always good, which puzzled those who directly took care of her. On February 2nd, with special permission from the doctors, the Baptism ceremony for Julia was completed, in the presence of a priest, the godparents and us the parents. This all took place in an intensive care unit. A few days after the ceremony, everyone witnessed a great grace. Julia began to breathe on her own. She barely used a small amount of oxygen, and for the first time the doctors spoke about the possibility of releasing her, so she could go home. These were fifteen wonderful days. We could carry her, and she was not receiving medication; she could interact with us more, and she even smiled. After this her condition worsened and she spent another fifteen days with tubes.

But once they removed the tube, she was able to remain for the rest of time with minimum oxygen support. Sometimes it was administered with a mask, other times with a nasal catheter. Five months and eleven days elapsed when the hospital called to give us the sad news that she had departed for heavenly home of God the Father. According to the team who was with her that day, everything happened very quickly. Her little heart simply stopped, and the doctor could not bring her back. She departed in peace. In spite of all the suffering, our hearts rejoiced with the happiness of the few moments we spent with her; we were grateful to God for giving us the privilege of being her parents. Julia’s birth helped our family to mature, and it united us. The pain that we felt daily and the feelings of impotence during her suffering were immense. But we cannot imagine our lives without her.

A letter from Julia

After Julia’s death her parents wrote a touching letter of gratitude to all the personnel of the neonatal intensive care unit, who had accompanied her during the months of this short and valuable life – in her name –.

"Dear Family of the neonatal intensive care unit:

I inspired my mother to write this short letter to you to thank you. I want to extend my gratitude to each and every one of you for everything that you did for me during these five months we spent together. For the care with which you surrounded me, for ‘the little candies’ during the times of tests – so that I would not suffer so much –for the gift you placed on my little bed, for all the refreshing baths, for lowering that fever that never seemed to go down, for the lost sleep trying to understand what was happening to me...Thank you for the bassinet, that made me comfortable. Thank you because you clothed me and perfumed me, for the ‘tents’ that you placed over me so that the light would not bother me, for the soups, and the juice, for all you did to make me feel at home. You were truly a family for me. After all, I spent much more time with you than with my parents and siblings. I know that after my birth many believed that I would not live long, and that is why they did not want to get attached to me.

But in a few days I conquered everyone with my lively and penetrating gaze. I did not stop struggling for life, for a little more oxygen, for a little more time. Now I am very well. I am completely happy, very close to God, the Heavenly Father, and in the arms of our Little Mother, knowing that I fulfilled my mission on earth. I no longer feel pain, lack of air, nor weariness. I am with other little friends who also spent some time with you, and who came here a little before me, and they join me in this expression of gratitude: Cayo (Pedro’s brother), Marian, Mateo, Lara (Luana’s sister) and the other Julia. I know there are others, but I still have not met them, since I only arrived here a few days ago...My mission was – and continues to be- to show everyone that LIFE IS WORTHWHILE.

Life is the greatest gift that we receive from the Heavenly Father, and we should take very good care of it with affection. We must not be attached so much to material things, and we should not get sick over useless worry. What really matters in our life is LOVE. How much we were loved, and how much we had loved. To love and to be loved, we do not have to have a perfect body nor enjoy good health (of this I am completely sure); rather it is the will to love and the willingness to sacrifice. Sacrifice and pain purify and increase love. You will completely understand why I say this when you are here with me. I did not get to see the light of the sun, nor did I eat chocolate, or jump into the sea, in fact, I did not enjoy any of the pleasures of this world. But I lived my life fully, since I was loved very much and I loved others.

I loved so much that when I understood that my stay in the hospital was becoming complicated, and since I was no longer a newborn, I needed to give my place to some other baby, who needed it more. And because my mother could not stand it any more, she was very tired of visiting me every day, so I asked the Little Mother in heaven to come in search of me, since the time had come. I know that separation is difficult, and it hurts very much, but I will always be with you, helping with whatever you need. As Jesus said, the Kingdom of Heaven is for the children, so from here I can do much. When things are difficult, remember me, and you can ask me for help, I will help. Love very much and love everyone, I guarantee that the reward will be immense: a place here in Paradise. Now I bid you farewell, once more expressing gratitude for everything and with the hope of seeing you again someday...With affection, JUJU"

Flavia continues relating: "Some people thought we were crazy, because of our decision. But our hearts are now at peace because Julia was able to accomplish her mission on earth. Yes, in fact her mission continues, since now I work as a volunteer in the hospital, and I help other mothers, who are in similar situations, and I take care of their children, who are in intensive care, for a long time with as much affection as possible. This testimony in favor of life is a wonderful task."

Translation: Celina Garza, Harlingen, TX, USA/amj