A Visitor From Heaven:
Hannah Colwell

Everything happens for a reason becomes such a common phrase when you lose a child. But, it is so terribly hard to understand that reason when it comes to Gaucher disease, or any disease that takes a child’s life.

Hannah Elizabeth Colwell was born on June 2, 2000. Just a few months prior to her birth, we received the devastating news that her 18-month-old sister, Sarah, was profoundly deaf. Needless to say, that was just the beginning of a traumatic year.

On June 2nd, my beautiful angel came into our lives. The first order of business was to find out if she had a hearing loss. When the doctor told me she had normal hearing, I breathed an unbelievable sigh of relief. Everything would be all right.

Soon after Hannah was born, her father and I separated. But still, I believed that everything would be all right. I had three beautiful daughters, Emily, Sarah, and Hannah. We would face what was to come, together.

Hannah was a happy, healthy baby. She had the most precious smile with those silly crossed eyes. I would call her my little cross-eyed baby. I thought the problem would resolve itself, but it never got better. When I took her to the doctor, he indicated she might need surgery and eventually glasses. This seemed like such a big deal, but still, everything would be all right. Hannah was still happy and still smiling.

Around the age of 3 & 1/2 months, I noticed a change in Hannah. Because I had gained a certain amount of knowledge about hearing loss working with Sarah, I guess you could say, I was paranoid about anything being wrong with Hannah. I watched her like a hawk. Something was not right. And, one day, I began to make loud noises around her as she slept. Hannah’s hearing was gone. But, I still believed, eventually, everything would be all right.

So, then came double the trips to Children’s Hospital of Cincinnati for audiology appointments, cardiology appointments, ear nose and throat, and ophthalmology appointments. But, we continued to smile between the tears. At about 4 months of age, things seemed to change even more. Hannah just could not tolerate her hearing aids at all. She was eating, but something did not seem quite right. And, her cry seemed to change. I still remember the stridor, raspy cry. I feel like I can still hear it sometimes. I believe during her 4th month, she rolled over only one time. She never rolled over again. She reached a weight of about 12 pounds and never gained another pound. I guess I realized that something was wrong. She ate and slept and played. And still, she smiled.

At the beginning of her sixth month, she became very ill which brought us to the emergency room at Children’s Hospital. I feel very fortunate to have such a wonderful hospital so close to home. Hannah was thoroughly examined and diagnosed with Failure to Thrive. At the end of our two-week stay in December 2000, the pediatrician discovered her enlarged liver and spleen. They took her to surgery for a liver and muscle biopsy and sent us home on tube feedings. Being a nurse, I felt confident that I could take care of her. As a Mother, I was scared to death.

We anxiously awaited the results of Hannah’s test as we struggled to make it through the holidays. Hannah’s cries became more painful, and her smiles seemed to occur less and less often. For Christmas, she received a small toy that brought her tremendous comfort. We called him Mr. Worm. He was a small soft rattle that she could hold in her hand and chew on. Mr. Worm never left her side.

After the first of the year, we had an appointment with the GI specialist at Children’s Hospital who gave us the preliminary diagnosis of Gaucher Disease. He referred us to one of the top genetics specialists of Gaucher disease, Dr. Greg Grabowski and his genetics counselor, Laurie Bailey. I knew now that everything would be all right. These were people known for their research around the world right here at home. Surely they knew of a treatment. I would take anything I could get.

I will never forget the day of January 8, 2001. My life and the lives of my children were changed forever. We arrived again at Children’s Hospital to meet with Dr. Grabowski and Laurie Bailey. We brought Sarah with us to be tested for the same disease, yet they were almost certain that she did not have any form of it. And, they were right. But what about Hannah? My little cross-eyed baby, who always smiled, seemed to be getting sicker, weaker and more sad.

I am not sure that I actually heard much of anything that Dr Grabowski said to me except for those words that I just knew he was not going to say; “This disease is fatal.” I felt like someone just ripped my heart from my body! Not my baby, not Hannah! There are no words that can describe the feelings that a mother experiences when she learns her baby is going to die. Then the ever present question remained, Why me? Why us?, Why Hannah?

I struggled most of my life with believing in God. Well, this did it for me. No God would take away my baby. No God would make her suffer this way. Why was this happening?

That day was the beginning of endless trips to the hospital. We returned to the emergency room that evening with Hannah throwing up so much that she could not keep anything down. Soon, we scheduled her for a mediport and a feeding tube placement with a Nissen procedure, where they close the stomach off from the esophagus, so she would not aspirate her food. She could no longer swallow or keep anything down. Their attempts to get IV access became futile and torturous to Hannah. The mediport was a blessing for her.

Just prior to her surgery, Hannah was baptized in the hospital. Surgery was mid-January, and she did well, until we suffered a rather large set back. It seemed as though she had suffered a possible tear in her airway, which led to immediate intubation and transfer to ICU. I was terrified. They attempted to extubate her over the next two days, but Hannah would not have it. I would just lay with her and talk to her and cry, mostly. I wanted so badly to hold her in my arms. After a couple days, they let me hold her at the bedside. And, I guess, she felt she was ready when she extubated herself. She always seemed to have the right answers at the right time.

Once we were able to return home, we went back and forth for Cerezyme treatments, an enzyme replacement therapy. She only received a few, which I believe made her comfortable for a short time. Then we began to find ourselves in the mist of a whirlwind of Hospice, social workers, doctors, nurses, home healthcare personnel, therapists and so on. The support that my children and I received from our friends, the staff at Children’s Hospital and Westside pediatrics, was incredible. They became our family.

Aside from all of the issues with Hannah, I still had to try to maintain some type of normalcy for Sarah and Emily, which became very difficult due to extreme circumstances. Emily, 7.5 years old at the time, was a very strong and loving older sister. She was always there to help and became very protective of her sisters and her Mother. Sarah, 2.5 years old, was affected so terribly by the separation of her father and I, by learning to cope with her hearing loss, and most devastatingly, she knew she was losing her baby sister, who she held in her arms everyday. The image of Sarah walking up to Hannah’s crib, rubbing her hand across the mattress and asking, “Mommy, where Hannah,” will never leave my thoughts. Sarah still attended her school, Ohio Valley Voices, which gave her some respite. The families and staff of OVV provided me with continuous prayers, love and support. Thank you.

At the time, it seemed as though the days and nights were continuous, never ending cycles of trauma and turmoil. Hannah rapidly moved through the stages of Type II Gaucher like a text- book story. First, the eyesight, and then the hearing loss. Her motor skills never developed. Then her inability to swallow came with the spasms and the difficulty breathing. Despite all efforts, her weight maintained at 12 pounds. She was becoming more stridorous and in need of oxygen and suctioning. Soon we would meet our angel of mercy, Julie. She was our home hospice nurse who loved my little Hannah as if she were her own. I honestly did not know if I could leave Hannah with her at first, but she took care of me, too. She taught me to utilize small amounts of time to take care of myself while she took care of Hannah. Thank you, Julie.

Throughout the month of February, it was like an unbelievable roller coaster ride. Questions arose; should we let her die at home? Should we be at the hospital? Should we make her a DNR (Do Not Resuscitate) yet? Questions no parent should ever have to ask themselves about their own child. How would I know what to do for her and when? Little did I know at the time, but Hannah let me know the answers every step of the way. She gave me unbelievable strength that I did not realize I had. I was not sure at what point to do it, but I began to plan her funeral, not knowing that it was only about a week away.

I remember telling Julie that I just did not know if I could make it through these endless days and nights. We were so exhausted. How much longer would this go on? We lived day-by-day, then hour-by-hour, then minute-by-minute. She had continuous spasms that would keep her from breathing and she would turn blue. The fluid would build in her lungs and require continuous suctioning. And, the Ativan we were giving every hour did not seem to keep her comfortable anymore. I could not take this anymore. Why would God make my baby suffer this way? I know in my heart that no one was actually making this happen, but why could no one prevent this from happening? No child should ever experience this kind of pain.

The day before she died was the calm before the storm. We put away the oxygen and the suction machine. We only gave her medicines to make her comfortable. And, we just waited. She held on so tight and so did I. Finally, Julie explained to me that I needed to tell Hannah that it was ok with me for her to let go now. It really was not! But, I knew I had to do it. I knelt down beside her lying on the couch and told her that I loved her and would love her forever. I told her that it was ok to let go now. She passed that day on March 7, 2001 at 4:30 in the afternoon. She was only 9 months and 5 days old. She took a part of me with her. But she also left so much of herself behind in me.

My heart was broken and I thought I would never recover. Although my struggle with Hannah’s illness was over, my struggle with understanding her life had just begun. I began to believe that here is a God and he is holding my baby in His arms everyday. He gave her to me because He knew I could love her like no one else could. And, He gave her to me to help me learn a lesson about life. I just could not figure out what that lesson was until over a year later when I read Joseph DeFacci’s story (a little boy who lost his battle with Gaucher disease). Hannah was given to me to teach me the true meaning of love, faith and devotion. I learned that no one can control life or the people around them. I learned to believe and have faith. And, I learned to be stronger than I already thought I was. Thank you, Hannah, for touching my life and so many others. Thank you, God, for giving me an angel. Now, everything is all right.

I am happy to support the Children’s Gaucher Research Fund and help in any way possible to find a cure for this devastating disease. This foundation is a family like no other that helps others through a never-ending cycle of grief. Their prayers and support showed me that I am not alone. Hannah has devoted her part to helping with the research of Gaucher Type II Disease. With this and the help of so many others, one day we will find a cure.

Susan Novinger
Cincinnati, Ohio