Sum, Haley Elizabeth

[left:6904e82118]http://www.cherubs-cdh.org/Album/new/sum2.jpg[/left:6904e82118]The Lord lives. The Lord is good all the time. My faith and hope are in God. He knows what is best for us if we let Him work in us. I thank God for the wonderful daughter that was given to us. Her name was Haley Elizabeth. She was a beautiful baby who came into this world on March 1, 2001, at 5:06 P.M., weighing 6 lbs. 12 oz. at Northside Hospital in Atlanta, Georgia. She came into this world “crying” just as any other newborn. She looked perfectly normal on the outside. However, the inside of her was not right. She had a condition called a congenital diaphragmatic hernia (CDH), which caused her stomach and part of her intestines to move up into her chest. This did not allow her left lung to fully develop. We had found out about this condition two weeks earlier, but the doctors (pediatric surgeon, OB, and perinatologist) were all very hopeful that they would be able to correct this problem.

Almost immediately after Haley was born, the neonatology team went to work on her to help her breathe with the one good lung (right lung) that she had by putting her on a respirator. The team then took Haley upstairs to the NICU to “stabilize” her.

At around 7:30 P.M., Joan Maples, the nurse who had been with us since 8:00 A.M. that morning to help deliver Haley, contacted the NICU. Joan indicated to us that Haley would have to be transported by ambulance to Egleston Children’s Hospital, which is about 30 minutes south of Northside Hospital. However, Joan did tell us that they would bring Haley to Robin’s room to see us before she was transported to this other hospital. We waited with eager anticipation to see her, and I was hopeful that her condition was good because the neonatologist explained to me earlier in the day that it could have taken a long time (24 hours or more) for her to be “stabilized” before she could be moved so that she could survive the trip. At that time, I thought this was “good” because she was to be moved so soon after her birth.

Finally at around 8:30 P.M., Haley was brought down to Robin’s hospital room and then taken afterwards to Egelston by ambulance. I followed her to the hospital to ensure that she made it there safely. Once I made it to the hospital, I found my way to the NICU. One of the nurses directed me down to the admissions office, where I had to complete the obligatory insurance paperwork. After this, I went back upstairs to the NICU. The nurse told me that the doctors were not finished evaluating Haley, so I went into the waiting room at around 10:00 P.M.

At 11:00 P.M. or so that night, the doctors came to me and asked if I wanted to see Haley. I was somewhat nervous but excited and went to see her. She was connected to a respirator and a bunch of other tubes. One of the nurses told me at that time that Haley was “very, very sick..” This sort of surprised me, because I knew there was a problem and thought that she was referring to the CDH. However, the tone of her voice made it sound much more serious. The doctor (Dr. Anthony Piazza) who examined Haley then came to me and wanted to talk to me and Robin immediately. I explained to him that Robin was still at Northside Hospital recuperating. Because Robin was in no condition to travel, I asked him if this could wait until the morning, and he said, “No.” I think at that time, I went into a state of “shock,” because I sort of sensed that the things he was going to tell us were not positive. Dr. Piazza and the nurses then led me into a private consultation room where we called Robin. The first thing that Dr. Piazza asked us was, “What did the other doctors tell you?” At first, I didn’t really understand why he was asking this and didn’t know how to answer. I thought to myself, “The perinatologist said that Haley would be fine; don’t you already know this?” Dr. Piazza then went on to explain to us that not only did Haley have the CDH, but she also had a problem with her heart. When I heard this, I don’t think that I wanted to believe it. “No one told us this before…,” I thought. The doctor then explained that because Haley had both conditions (the problem with the diaphragmatic hernia and heart) there was nothing more that they could do. Haley would not be able to survive on her own, and it was only a matter of time…

I then asked Dr. Piazza if Haley would make it through the night so that Robin could see her. Dr. Piazza indicated that she probably would be OK. Naively, I thought to myself, “Maybe things will turn around, and she will be better in the morning.” I didn’t really know what to do. I felt helpless because I couldn’t fix it or change the situation. After this, I went back to Haley and prayed with her and dedicated her to the Lord. I told her that Mommy, Emily and Daddy loved her. I then drove back to Northside Hospital around 1:00 A.M. to be with Robin. On the way back to Northside Hospital, I listened to a song called “Enchanted,” which I dedicated to Haley.

Haley had taken a turn for the worse early in the morning, and the NICU team had to revive her. Robin and I went to the hospital to be with Haley at around 6:30 A.M. but did not know what to expect. When we got there, even though she was connected to the respirator, she looked very good. I asked Dr. Piazza again if there was anything that could be done, and again he told me that it was “inevitable” and only a matter of time. The doctor then asked if we wanted to hold Haley. At the time, I didn’t want to, because I didn’t want to hurt her… But I did end up holding her for several hours and was so glad that I did. Even though it was very hard, I was grateful that I could be with my daughter at that time. We were able to pray, sing, and read some children’s books to her. I really believe that little Haley knew that her mommy and daddy were there and that we loved her.

At around 11:00 A.M., Friday March 2, 2001, Haley went to be with the Lord. At that moment even though the sorrow Robin and I felt was insurmountable, I felt somewhat at peace and very grateful that I was able to spend the time that I did with her and to be able to hold her.

To Haley Elizabeth:

God was very gracious to bless me with a precious little girl like you. When you were born, you reminded me of your big sister because you looked a lot like her. I wanted to hold you close to me so that I could protect you. I wanted you to live, but it was not meant to be… Life is so precious and when I was with you and praying for you, I realized that everything else that crosses our path in life seems so trivial…

I will never again get to read to you, sing or pray with you. I will never again get to hold you in my arms or kiss you. I will never get to take you to school, send you off to college, or see you get married. But know this, I love you and always will. You will never stop being my daughter. You were a beautiful baby. After you were born, the pediatric surgeon called you a “survivor.” You are a “survivor” in my mind because you will always “survive” in my heart. Words cannot express how much your touch felt to me, and I long to see you again one day in heaven. You were surrounded by so much love during your time here on earth. Lots of people loved you and were praying for you. But you are now in very good hands with the King of Kings. I will always believe that. I will miss you very, very much.

I love you, Daddy

“And He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away” (Revelation 21:4).


Written by Haley's dad, Jay Sum (Georgia)
2001