Our Gaurdian Angel:
Lauren Marsh

On January 24, 1991, my husband Russell and I had our first child, Lauren Gray Marsh. We will never forget the words from our Pediatrician (still our Pediatrician) after Lauren’s first examination – “Everything appears to be normal.” Those wgrds came back to haunt us later.

At eight months of age, we were noticing developmental delays. Lauren was not sitting or crawling, and she was not growing. Shortly after that she began having health problems involving three hospitalizations in about four weeks time. On her last admission, Lauren stopped breathing (respiratory arrest). This resulted in being connected to a ventilator for breathing support and transported to John’s Hopkins Hospital in Baltimore, Maryland, from a nearby county hospital. After two days of many tests and finally a bone marrow aspiration, her doctors broke the news to us that Lauren had Gaucher’s Disease Type II. She was nine months old, and because of the severity of her symptoms, the doctors did not expect Lauren to live to her first birthday.

We were in contact with National Institute of Health (NIH) in Bethesda, Maryland and a specialist in New York. At the time, there was no treatment for Type II Gaucher’s Disease. There was some experimentation of a hopeful drug on animals, but not humans. Russell and I brought Lauren home with a hospice program in place. Because of Lauren’s breathing instability and swallowing difficulty, we brought her home with a tracheostomy (an opening in the windpipe) to ease her breathing effort, and a nasogastric tube (a tube inserted into the nose going to the stomach) for feeding.

As a nurse and her Mother, I became Lauren’s primary caregiver and her Father was my assistant. We have said that Russell earned his LPN license by learning all the extra things he had to learn in addition to routine baby care. Lauren’s care consisted of changing the plastic trach tube in her neck once a week and using a bulb syringe to remove excessive respiratory secretions. She had tube feedings of baby formula and Pediasure through the nasogastric tube several times a day. Despite the discomfort we had to cause Lauren to maintain her life, she remained happy and content. She enjoyed chewing and shaking her plastic keys. Occasionally, we gave her a piece of licorice to hold and chew to give her flavor to taste. Lauren was relaxed with her Grandfather (he didn’t do any medical care for her) whose arms she often fell asleep in.

After Lauren was diagnosed with Gaucher’s Disease, she had many ups and downs in her condition. Her physical ability regressed to the point of not being able to roll over any longer. In addition, I found out I was pregnant – normally an exciting event, then terrifying. Russ and I kept the pregnancy a secret until the Chorionic Villa Sampling (CVS) testing came back negative for Gaucher’s Disease. We also planned Lauren’s funeral in advance to lessen the load, preparing for her death.

To the doctors’ surprise, Lauren fought Gaucher’s Disease for five months, but succombed to the disease March 28, 1992, at fourteen month of age. She died peacefully in her sleep of respiratory failure, being held by a friend. Four months later we had a healthy daughter, Erin, followed by another healthy daughter, Kelly, twenty months after Erin.

Lauren’s disease and death has taught us a lot about life. We are very thankful for our family. God deals us what we can handle. Our relationship as husband and wife and family has flourished from our experience. We were able to stick together and help each other through the most difficult time of our lives. Our family and friends were as supportive as possible under the unusual circumstances. We have learned not to avoid a person who is grieving, but to approach and embrace them.

Erin (7) and Kelly (5) know about their sister Lauren, their “Guardian Angel”, as we refer to her. They show her pictures to their friends and tell them about their sister in heaven. They also cry sometimes because they miss her, even though they never met her. As a family, we visit her grave and replace the old flowers with new ones through the year.

Russell and I have spoken to a few Gaucher families. Helping others deal with the grief of this diagnosis helps to give us a good feeling; we’re helping others through their most difficult times, since we made it through ours. It also keeps Lauren’s memory alive.

We plan to be a part of the Children’s Gaucher Research Fund, until a cure is found.

Russell and Michele Marsh
Baltimore, Maryland