Mandy Lipke

On the day the news came that my husband and I were to be parents for the second, and final, time, it was one of the happiest moments of our life. Joining our first daughter, Cassie, who had just passed her first birthday, this, would be the piece that made the puzzle complete. We had always wanted 2 children. Two girls, we reasoned; they could be playmates and best friends. Then, too, my husband joked, "Nobody will be outnumbered this way!"

The first inkling of trouble was just 4 months into the pregnancy. I began to bleed heavily. Twice hospitalized for heavy blood loss, I was cautioned to expect the worst, that my baby would be miscarried. Bed rest was the only possible solution. I took straight to bed (or couch!) and amused myself and my daughter by reading for weeks. Then, with 15 weeks still to go in my pregnancy, I went in to labor.

Mandy was only 1 pound, 15 ounces, the day that she was born. My first glimpse of her, all I could see was tubes and tape. Lots of tape! With the unusually high lung damage that she sustained, she wasn't even expected to survive. To everyone's shock, she did much more than that. She grew and thrived and soon reached the magical mark of 3 months, weighing in at a hefty 4 pounds, 9 ounces, and then she came home. Just learning to eat and breathe properly, without the help of tubes, was work enough for her at first, and then came smiling, then sitting, then crawling. Before anyone knew it had happened, Mandy was 1 year old! As her second major miracle, besides just still existing, her lungs cleared up; there was no trace of the chronic lung disease that had kept us in constant worry that first year. Wow! We held our girls in our arms and thanked God upon learning this exciting piece.

Around then, we began to notice more and more, the constipation that was making her life miserable. Finally the day came that we realized she had had no bowel movements for over 2 weeks. The exact number of days is still under debate, but it was forever to so small a girl. By now our miracle was 2 years old. She ate, slept, played like a 'normal' child. But now that nagging problem that we'd seen coming for so long demanded attention. A barium enema and a suction biopsy later (and many tears of children and parents!), we got a "real" answer. Hirschsprung's disease. Looking for answers and help, we went to more doctors, the internet, and every resource we could find. Our paediatrician had prescribed laxilose, a syrupy laxative, in whatever amounts needed to encourage her to "go". Soon she was taking more than twice the adult dosage daily, and still needed frequent help in the form of suppositories and enemas. That was pure hell for every member of the family, and I would do the deed, then hold her in my arms crying and apologizing.

We spent 6 months in this limbo, and then went to a bigger center for more thorough tests. Mandy was admitted to the hospital, given a general anaesthetic, and given a "full-thickness" biopsy. The surgeon called us within 24 hours. There was no Hirschsprungs!! At first we were elated, then we realized that this didn't solve the problem; we still didn't know what she had or how to treat it. I called on my faithful family at Guardian Society, and received some constructive ideas. Armed with these suggestions, and having done the research to back them up, I went back to my ped., and asked for more testing. I knew what I wanted! But he refused, saying that if we could only clean her out, her colon would "shrink down" and everything would be right again. So now we are back where we started. More enemas, more suppositories, more laxatives, more constipation and pain. We still fight with the doctors every couple of weeks, and Mandy still does what she has to do to survive. There don't seem to be any easy answers, and the doctor isn't worried about finding out what's 'wrong'. Just treat it, is his motto. The hurt she endures just trying to go each and every time is still heartbreaking, and she complains sometimes, but often tells us that "Everybody has to go" and tells mommy not to worry. At 3 years old, she teaches her parents the meaning of faith, trust, and courage.

We are so thankful for The Hirschsprungs & Motility Support Network (HMDSN). In it, we've found friends who can truly relate to us and share in our trials and triumphs in all aspects of life.

Tammy Lipke

January 2000