Friday, July 3, 2015

July 3 - Dear Nicholas Sparks (Guest Bloggers Mary Sierra-Hales and Joseph Revelle Hales)

Dear Mr. Sparks,

My name is Mary Sierra-Hales, 27 years old and a mother of three girls and our darling little boy, Joseph Michael Hales. Joseph Michael Hales was born on April 7th and died April 10th of 2001 from severe birth defects, one of the major ones being a diaphragmatic hernia.

When I first found out I was pregnant, I was a little scared but happy at the same time. I knew in my heart that this baby would be a little boy, the answer to many prayers for my husband and I to have a son. We had longed for a son for a long time, so when the doctor confirmed that I indeed was carrying a boy, we were overjoyed. That joy was to be very brief for us.

My pregnancy went better than expected, for I am considered high-risk for pre-term labor and other problems associated with pregnancy. I kept all of my doctor's appointments, exercised, and ate healthy until the week before he was born. I had gone into the hospital for pre-term labor and complications from the flu. Little Joseph's heartbeat was acting up, so I was sent for a fetal echocardiogram. The doctors assured me that there was probably nothing wrong.

At that appointment, I spent three hours on the table as the doctor checked my son out. After much delay, I was told that my son had a congenital heart disorder that he would survive, barring nothing else was wrong. My heart sank and I felt that God was telling me to prepare because the worst was yet to come.

One week later, I was airlifted to a hospital about three hundred miles away from home. Things had gotten worse, and I could no longer hold our son in. I prayed as I was being flown to Corpus Christi, Texas, where Driscoll Children's Hospital is located. As I delivered him, I prayed for things to go well, but they did not. I remember so clearly as the doctor pulled our son out of my womb that he was squirming and had cracked his little eyes open. He was huge for being only 33 weeks gestational age. He weighed in at 6 pounds and 10 ounces! I saw him, and I hope he saw me too. I cried because he looked so perfect. As soon as they cut him away, he went downhill and soon went into cardiac arrest. The doctors did not know the extent of his disorders. They tried to resuscitate him but blew the only good lung he had. Meanwhile, Joseph, my husband, had arrived at the hospital where I delivered. He did not see our baby and did not know what was going on until he was pulled aside and had to sign forms for life support consent. He did not know how to tell me that our son was very ill. I took one look at my husband's face and cried. My attending nurse in the recovery room, Lori, was there with us as we heard the news of our son's deteriorating condition. She cried with us and tried to comfort us as I was wheeled out into the hallway to look at my son, just in case he died and I did not get the chance to see him alive again. He looked so beautiful despite the tubes and monitors. I wanted to hold him but settled with touching his arm and telling him that I loved him very much. He was then taken to Driscoll.

Those three days were such a blur of activity and sorrow. We got phone calls and visits from family and friends. I had a pass to go see my son for a few hours and spent the time kissing him and telling him that mommy loved him so very much and that mommy would be there for him no matter what. The team that took care of our son was excellent. They were very kind and caring. The head of the team, Dr. Karl Serrao, kept us informed at all times and took care of little Joseph as if he were his own son. He explained to us all the things that were being done to help our son, including the two types of ECMO that were used and why they were keeping him on life support (they were trying to give him every possible avenue of treatment so that he might live).

Finally, on his last day, we went into a conference with the doctors, and they laid it all out for us. Our son, tough as he was, was not going to live. He had the congenital heart disorder aggravated by the diaphragmatic hernia, the total agenesis of his left hemidiaphragm, one non-developed lung, one non-developed kidney, a rare kidney disease, and he had had two strokes the night before. Karl gently told us that it was time for our son to go. Joseph and I had already discussed taking our son off of life support, so we consented to sign the DNR (Do Not Resuscitate) orders and the forms for a full, unrestricted autopsy that they might learn more about his conditions and someday be able to help other babies in similar situations. We could not hold that back from other children; our son was going to help other babies, even in death. We cried as we consented and the doctor (Karl Serrao) did the most amazing thing. He was crying with us and came to us and held us both. He felt our loss almost as much as we did.

At our son's bedside, we took turns kissing him and touching him. I studied his little face and did my best to learn every inch of his body--his eyes, nose, toes and fingers. He started to go after daddy told him it was okay to go and not to be scared, but then he stopped and kept on fighting. Our son wanted to hang on. Every time he started to go, I went to him and told him I loved him. He would fight on until finally, I leaned down, kissed him and told him that it was alright to go, that Mommy would miss him and not to be scared, that we would see him again someday--as I said this and bent down to kiss his little nose, he died. I think he was waiting for me to tell him that it was okay to die and leave us. My heart broke into a million little fragments that seemed impossible to pick up. My husband and I were devastated at his passing.

Our son was so very ill. He had all of the odds stacked against him. At the autopsy report conference, we were assured that we did all we could for our brave little boy, but he had not even a fraction of a percent of a chance of survival. Yet with all of these odds, he still held on for three days! He was so brave and so strong. He had the diaphragmatic hernia, severe heart defects (at least three, I believe), Potter's Facies (kidney disorder), one lung, one kidney, virtually no spleen, and the strokes, but still he held on until we told him it was okay to die and not to be scared of what was about to happen to him. All of the congenital disorders combined made his case extremely rare. The doctors learned a lot from doing the autopsy--enough to be able to better handle such a rare case like his. For this, we have a little bit of comfort in knowing that maybe someday, other children will benefit from his loss.

It has been almost two months since our little boy came into our lives and changed it forever. Not a day passes where my husband and I do not cry and think of him. We are trying to adjust to life without him. The emptiness seems almost as deep and as endless as our love for him. We hug our other three children all the more tightly and love them all the more that we can. We are trying to live each day as best as we can, but it has been very hard so far. We realize that the journey on the long road in grieving and some sort of recovery has just begun for us. We have had the support of our family, friends and church ward (we are Mormon) to help us out. We keep in contact with Dr. Serrao and a few of the people that were there for us as we went through this ordeal (the chaplain at the hospital, social coordinator, and the nurse that attended me after my son was born). They have been just wonderful in supporting us and reassuring us that our son is in a better place, with no more pain and lots of love and care while he waits for us to go with him.

It is such a credit to our son's valiant spirit and willingness to live that he held on. He was certainly a strong little boy with a strong spirit and a strong heart. My family and I will miss him and feel grateful to have the opportunity to share our story with other CHERUB families. We now know that we are not alone. Sometimes when we are really having a tough day, all we have to do is think of how beautiful he is and how blessed we were to have him those three days and realize that he is a perfect little angel with God and we feel much better. I want to thank everyone that did all their best for our son, especially the team at Driscoll headed by Dr. Karl Serrao. We love all of you for all that you have done and still do for us. I close this letter with a small saying that we saw in a grief pamphlet that brings us much comfort in this time of need (we love him and miss him so much that it hurts):

Jospeh Michael is a twinkle in our eyes, in our hearts, and now in heaven. Forever loved and missed by his sisters Kristen Lorraine, 10, Amber Jeanne, 8, and Anna Elise 2 1/2 and by mommy and daddy.

Mary Sierra-Hales and Joseph Revelle Hales and Family (Texas)

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