Families for HoPE, Inc.

For six years, my husband Dennis and I had been trying to have a child. We went to fertility clinics, took fertility meds all to no avail. In 2006, we decided to stop trying and were resigned to the possibility of never having children.

In October of 2006, I started having a few pregnancy symptoms and decided to take a test. I really didn’t expect anything to turn out, figuring that it would once again be negative like all the many tests before it. You can imagine our surprise on that morning when we saw a second line begin to appear, and we were so excited!

Because of my diabetes, I was considered high risk and was monitored very closely. I was put on insulin and given an ultrasound every 4 to 5 weeks. To say I was a paranoid mommy is an understatement. I constantly worried and avoided everything I should to keep my baby well. Each ultrasound showed our baby to be happy and healthy and each week my family pleaded with me to relax and stop worrying.

At 30 weeks, the baby wasn’t moving as much as usual, so I decided to go in to the doctor for a checkup.

The ultrasound in the doctor's office showed the baby to be fine; however, I was not. My blood pressure was through the roof, and I was immediately admitted to the hospital. Two days later, I developed pre-eclampsia, and I had to deliver via c-section.

Our son Hunter was born on April 14, 2007 and weighed 2lbs, 14oz. I remember holding Dennis’s hand while lying on the table waiting to hear our baby’s first cry with anticipation. I clung to the hope that with the steroids I was given and the fact that we were almost at 31 weeks that my baby would be okay and just need time to grow.

In my dark hospital room, we sat waiting to hear if our baby had survived, and if so, what was wrong with our baby. All we knew was he had a cleft, but the urgency with which they took him made us aware that there must have been more.

The doctor came in, and said Hunter was stable. He then began to list the things that were wrong. "He has a cleft lip and palate. He is missing half his nose. Thick white cataracts and may be blind. His heart is on the wrong side. He has no ear canals and is probably deaf.

About this time, everything just started fading into the background for me; I couldn’t hear any more. I just kept wondering what I had done to this poor child, to my baby.

They were going to transport him to Primary Children’s for a higher level of care. They brought him in to see me before he went. The first thing I noticed was that he was so little, so red and so BEAUTIFUL. The second thing I noticed was his ventilator. They brought him right up to my bed, and I was able to touch his perfect little hands. I was so heartbroken, and yet so proud of this beautiful little child. The thought of him being taken away from me made me feel as if my heart were being ripped out.

Dennis and Uncle Niall went to be with Hunter at Primary. I was stuck in the hospital for two days to recover before I could go see him.

Primary Children’s did full evaluations on him. The CT scan on his brain came back as normal. He was not missing part of his nose, but it was flat. He did have a cleft lip and palate. He had dextrocardia (heart on the right side). He also had scoliosis, some ribcage anomalies and only one functioning kidney. All of these things it seemed were livable. Thinking we had gone through the worst of it, we settled into the NICU and prayed for Hunter to grow.

We were told that at this point it was up to us to tell them what we wanted for our son. In our hands was his fate--fight for his life or let him go. We were devastated.

As a new mother, I had no idea what to do. I didn’t want him to suffer, but I didn’t want to lose him either. My mother asked the doctor "If this were your child, what would you do?" With tears in his eyes, the doctor replied, "I would do everything I needed to do in order to bring him home and love him for the short time he is here." Those words branded themselves in my heart, and I was determined to do that very thing.

Hunter spent 2½ months in the NICU. Dennis and I never missed a day and were with him always. There were many triumphs and scares, and we very nearly lost him several times. As his mother, there were times that my decisions to keep fighting for him were called into question. I felt almost ashamed that I was fighting for my son, and I worried that I was putting him through too much. In my heart, I knew I didn’t have a choice; I knew I wanted him home with us.

He came home on June 19, 2007, one day before his due date. We were elated and terrified at the same time.

I cannot say that caring for Hunter was easy, but I can say, with certainty, that it was worth it. We fought hard for Hunter to stay with us and were in and out of the hospital many times for different issues. Watching him struggle was hard, but each time I laid down with him in my arms and snuggled his fuzzy hair, I knew it was worth it. When he looked at me with his big brown eyes filled with adoration, I knew it was worth it.

Some may question quality of life. I know that the doctors certainly did, but all they ever saw were his times of sickness. They didn’t see him enjoy his swing and his dudes (what we called his favorite mobile). They didn’t see him sucking his binky or snuggling with mommy and daddy. They didn’t see him watch his cousins play or reaching for the flashy lights. They weren’t blessed to see any of the good times that made Hunter’s stay here such a blessing for him and for all who knew him.

In the end, we discovered Hunter had a congenital heart defect that couldn’t be fixed. It was the first week of November 2007 when we learned this new information, and we decided it would be our last hospital visit.

Hunter lived to be almost 9 months old and weighed over 10 lbs when he decided to pass away peacefully in my arms on January 11th 2008.

His last two months were the most amazing months of his life. He learned to lie on his belly and hold his head up; he was calm and happy and spent a lot of time with everybody that loved him. Hunter’s life has taught all who knew him immeasurable lessons in love, hardship, sacrifice, determination and most of all HoPE

If I could give one piece of advice to parents going through a similar situation, it would be this . . . "Never give up, never stop counting your blessings, and most of all, no matter what the circumstances, never give up HoPE."