Durbin, Amanda Leigh

[left:092a352ff1]http://www.cherubs-cdh.org/Album/new/Durbin2.jpg[/left:092a352ff1]My husband Robert and I were married in 1982 right after I graduated from high school. We both decided to wait awhile to have children, to let our marriage develop a good foundation before we started a family. Six years later we started trying, and it wasn’t long until I found out I was pregnant. I was very excited but also a little anxious. I had always been nervous about having children because I was afraid something would go wrong, but my doctor reassured me that things looked fine, and I should deliver a healthy baby. She did mention several times that the baby seemed to have hiccups often but didn’t think that it was anything to worry about. I wanted an ultrasound, but my doctor didn’t feel it was necessary, since all other tests had come back normal.

We spent weekends shopping for just the right things to fill the baby’s room with. We wanted the environment our child grew up in to be a loving one and we made all our choices reflect that one idea. As my due date came and went, I became preoccupied with the child I was about to meet. I was already so much in love with this baby. Two weeks after my due date, my doctor decided to induce labor. I remember as we drove to the hospital, I was thinking, “Now there’s two of us, but soon there’ll be three.” I knew that after this day was over, our lives would never be the same. After ten hours of labor, my doctor became concerned because the baby’s heart rate had dropped twice during labor. She decided that instead of risking any further stress on the baby that I should have a Caesarian. My husband was allowed in the operating room, and although we were scared, we were relieved the waiting was over and we’d finally get to see the baby we’d waited so long for. The moment she was born, we were both thrilled to see this beautiful little girl we’d been blessed with. She looked so perfect and healthy.

I kept waiting to hear a cry from her but only heard the sound of the suctioning tube. I twisted my head back over my husband’s shoulder and saw the pediatrician gently shaking her but still heard no sound. I kept asking what was wrong, and my doctor kept saying to not worry, the pediatrician would take care of her. He wrapped her in a towel and carried her out of the room. A few minutes later, a nurse came back in and said that there was a problem and the pediatrician would come to speak with us when I was moved to recovery. Since I was still experiencing the effects of the epidural, everything began to seem surreal. I wanted to hold my baby. I wanted them to hurry up and fix whatever the problem was so I could have her with me.

The nurse came in and told us the pediatrician had been on the phone with a neonatal intensive care unit fifty miles away and that they were sending a doctor and nurse by helicopter to transport. Within a few minutes he came in and said he couldn’t hear a heartbeat in the center of her chest or on the right side, but finally heard it faintly on the left. This was what alerted him to a potential problem. He had immediately placed her on a ventilator and was waiting for the transport doctor to arrive. A nurse came in and handed us a Polariod picture they had taken of her. This would be the only reminder I would have of her for three days.

When the doctor and nurse arrived, she was placed in an incubator and brought in to us. I was able to touch the black hair at the back of her head. The nurse explained initially she would be stabilized and then taken immediately to surgery to repair what they suspected was a hole in her diaphragm. I asked if she would be all right then, to which she replied, “I don’t know.” On the way out they asked her name, and I told her Amanda Leigh. I had always loved the name Amanda, and Leigh was a derivative of my husband’s middle name. He left immediately so he could be at the hospital with her. Neither of us wanted her to be alone.

The nurse hurriedly moved me to a room where I could watch the helicopter take off. I clutched her picture to my chest and prayed that God would let her live long enough so I could show her how much I loved her.

At four o’clock the next morning the surgeon called and told me that she had survived the surgery. He told me she had a right-sided diaphragmatic hernia, which had developed probably within the first six weeks of the pregnancy. They had decided this because her liver had been small enough to slip through the hole and form in her right chest cavity, along with part of her intestines. The intestines had been moved down but the liver had to stay where it was since it had formed there. She had no right lung and her heart was left slightly tilted. He said she had a fifty-percent chance to survive the next forty-eight hours and beyond that they couldn’t even speculate a survival rate. We would have to wait and see.

For the next two days, I waited to get out so I could see her. I slept with her picture on the pillow beside me. Every time I would call, I was told she was still doing poorly, and I was afraid the next time I called they would tell me she was gone. Finally, on the third day, she stabilized, and my doctor told me I could go home if I got some rest. I went right to the hospital. I couldn’t believe all the tubes and monitors that were hooked to her. I reached out to touch her foot and was cautioned against it by the nurse. She explained that even though she and I probably both needed the closeness, she just wasn’t stable enough yet to tolerate much stimulation. This was the most horrible feeling I had ever known. For so long I had waited to hold her but had to content myself with just looking. I hoped she would sense my presence and know that her Mom and Dad were there for her.

The next few weeks settled into a routine of me being at the hospital all day, every day, standing at her bedside whispering to her, telling her about her room at home, how much we loved her and had waited for her. I must have told her a thousand times I loved her, and I believe she knew it because each day she became more stable.

I took every opportunity to talk to her nurses and try to learn about her treatment and care. Some of them were very positive and supportive. Others seemed almost indifferent to the fact that this was our child that we loved so much, and they took every opportunity to remind us that she was the most severe case they had ever seen and that we shouldn’t hold out much hope for her. This was a fact we had faced from the very beginning, but I believed God had worked a miracle letting her live past those first two days. I knew that everyday I had with her was a gift. I was determined to make the most of the opportunity He had given us.

We became close to one of her nurses in particular. Cheryl requested Amanda everyday and cared for her as if she were her own child. She explained to us early on that the decision for our daughter’s care was ultimately our choice and that none of the staff would ever feel the love or concern for her that we did. We had the right to question and even deny anything we felt the doctors were doing that wasn’t in her best interests. This was a wonderful gesture on her part and one I must say I don’t think many others would have done. We felt as if we did have some control over the situation and this wasn’t some horrifying roller coaster ride we were enforced to endure.

As devastating as this defect was on her anatomy, she had a strong spirit, and there were actually several good, peaceful days. After being stable for a couple of weeks, they allowed her to come awake, which she tolerated fairly well. I remember many times racing to the hospital to see her, fearful that she had taken a downward turn, only to walk in the NICU unit and see her staring at her mobile, kicking her feet in the air. One day in particular, she was awake and I began talking to her. She stared right at me and wouldn’t take her eyes away. It was as if my voice was the most beautiful thing she’d ever heard. The whole world fell away and it was just the two of us. I had never known love like that before in my life. I held her every chance I got and snuggled her as much as I could, knowing that each time was a gift.

In early December, one of her doctors heard a heart murmur, and they discovered that a valve, which normally closes at birth, hadn’t. From what I was told, this is a fairly common problem and most times a child is older before surgery is performed to correct it. Amanda had begun to have bronchiospasms and was taking breathing treatments to help oxygenation. We were unsure whether this was an early sign of too much stress being put on her trying to function with one lung or if the heart valve being open would make that much difference. The decision was made to do the surgery in order to give her the best possible chance. In hindsight, I know now it didn’t make any difference. The bronchiospasms still continued. She had begun having digestion problems and several different formulas were tried before they found one she could tolerate. She had lost a lot of weight.

Around the first part of January she went into heart failure. Luckily, the doctors were on rounds when it occurred and were right there. They explained that because of a build up of fluid, her potassium level had gotten too high, which led to the heart failure. They had given her Lasix to alleviate the problem. We knew that the time had come. We asked them to stop treating her. The head of the neonatal team agreed to feed her and make her comfortable but make no effort to resuscitate if she went into heart failure again. He told us that in seventeen years of practice he had learned that somehow parents always knew when their child had come to the end of her road. He said that he would respect our wishes and if there were no improvements in two weeks, we would have to make a decision concerning her treatment.

The next few days were so horrible. We sat at her bedside night and day. We didn’t want her to die alone. On the morning of Jan. 15th, we decided to go eat breakfast together. She had a bad night but had stabilized a couple of hours earlier. We had just gotten to the cafeteria when we were paged to the NICU unit. Her doctor met us at the waiting room door and said she was gone. The nurse had just recorded her vitals when everything-- heart rate, respiration, everything, just stopped. I couldn’t believe she had gone without us being there. I felt like God had waited until I wasn’t looking and took her. We held her and kissed her and said goodbye. We left the hospital, just the two of us again.

I don’t remember much of the first four months after she died. I relate it to being like driving to work with a lot on your mind. You make the drive, but you don’t actually remember doing it. I went to work, shopped, paid bills, dealt with insurance, but don’t remember doing any of it. I was just numb. It took almost a year before I could talk about her without crying.

We have since had another daughter named Emma Leigh (after her father and sister). She was born perfectly healthy and the sound of her crying was the most wonderful sound. If there are any parents worried about having children free of defects after giving birth to a child with CDH, it is possible. We have always told Emma about her sister, and we make every effort to keep Amanda a part of our family. We take flowers to her grave on her birthday and her pictures are on our wall and in our wallets. I don’t believe someone stops being part of a family or that you stop loving them just because they’ve died. I don’t always talk about her in public because it makes other people uncomfortable, but I will always be so proud of my baby girl. She was one of the strongest people I’ve ever known.


Written by Amanda's mom, Tami Durbin (Kentucky)
2001