Breathing life into hopes for a family

Rare lung disease won't derail goal

By Erica Noonan, Globe Staff, 4/13/2003 http://www.boston.com/news/globe/

The doctors told Andrea Hanson that she might not live to see age 25, and that she would most certainly never have children.

But Andrea had other plans. Today, she celebrates her 30th birthday, and is busily preparing for the birth of her first child, now being carried by a surrogate mother in Western Massachusetts.

The Reading native's unwillingness to accept the limits historically placed on sufferers of the rare and often deadly disease pulmonary hypertension has become a friendly family joke.

''Maybe this sounds like a cliche, but Andrea is a testament to a positive approach to life,'' said her husband, Chris, 29, sitting in the living room of the couple's North Reading home. Photos of other people's babies and children cover the refrigerator and smile out from frames in every corner.

Upstairs, a nursery is being prepared for a baby due on May 15, to be named Shea Elizabeth if a girl or Kyle William if a boy.

For Andrea, the arrival of her child will mark a major victory in a difficult and harrowing medical journey that began in 1994, while she was completing her senior year at Bentley College in Waltham. A former Reading High School athlete, Andrea found herself increasingly fatigued and short of breath while traversing the school's hilly campus, but chalked it up to her failure to lose the ''freshman fifteen. ''

'I really thought I was just out of shape, and needed to get to the gym more,'' she recalled. It wasn't until February 1996, when she couldn't climb a flight of stairs without becoming winded, that a physician at Massachusetts General Hospital offered the grimmest of diagnoses: primary pulmonary hypertension - an illness that strikes two people per million, most of them women. The illness is caused by high blood pressure in the lungs. There is no cure, and without treatment, half of PH patients would die within five years.

Secondary forms of PH are associated with preexisting heart and lung problems and the use of now-banned diet drugs such as Fen-phen, but primary PH, the type Andrea lives with, strikes for no known reason.

''Just lucky, I guess,'' she said wryly. ''I never dwelled on dying. A lot of people get very afraid and depressed, but I tried not to let it affect me. ''

Andrea was told she would probably not live two more years without a double lung transplant. A supportive family and many close friends helped cushion the blow and keep her spirits up, but it was a difficult and dark time, she said. ''I always thought I'd be living at home and single. I didn't know what my life would be like.''

But some hope came in the fall of 1996 in the form a small black fanny pack. Doctors recommended that she be treated with the newly approved Flolan Pump, which injects a dose of medicine every 70 seconds into a catheter that leads to her heart.

Andrea's health improved dramatically, although she found it hard to be permanently connected to a pump and an intravenous tube. Eventually, she learned to improvise - hanging the pump on a hook while she showered and on the bed frame while she slept and slipping it into an evening shoulder bag when she went out on the town with friends.

It was during one of those evenings out that she saw Chris - whom she had dated in high school but hadn't seen in years - across the crowded barroom of The Kells in Allston.

They socialized casually at first, and Andrea managed to avoid telling him about her condition for more than two months. ''I was scared to death to tell him,'' she said. Finally, over dinner at a Bennigan's on Route 1, she just popped out with it, including the fact that she was still on the list for a double lung transplant.

Chris, to her immense relief, was unfazed. His father had survived a kidney transplant, so he understood the medical issues. When she explained that she couldn't bear children, he didn't bat an eye. ''I loved her, not the fact that she could or couldn't give me kids,'' he said.

They married in June 2000. These days, Chris often mixes the drug formula that must be replenished daily in Andrea's pump and reminds her to change the AA batteries every Sunday. Their extended network of family and friends keep ice packs in their freezers, so Andrea can keep her medicine cool no matter whose house she's in.

With her medical situation stabilized and her future bright, Andrea and Chris decided they wanted to have a child together through in-vitro fertilization, to be carried by a surrogate mother. For months, they wrestled with thorny medical, financial, and ethical issues. Not only can fertilization and surrogacy cost more than $40,000 in medical and legal bills, but the couple also weighed the morality of having children when Andrea suffered from a life-threatening illness. (Medical tests showed that she was in no danger of passing along PH to her baby, and that the egg retrieval procedure needed for in-vitro fertilization would not harm her health.)

They decided to go forward and posted messages on surrogacy websites. ''We felt that nothing in life is certain,'' said Chris. ''You can walk out the door and get hit by a car. You can get cancer. Everything is a calculated risk. ''

A woman living in Western Massachusetts - who is married and already has two young children of her own - responded to the couple's note on the Web and, after a series of e-mails, calls, and personal visits, she told the Hansons that she would be their surrogate. ''I really wanted to work with them. They seemed so fun, loving, and upbeat. My kids have come to love them like an aunt and uncle, and I just couldn't imagine Chris and Andrea without kids of their own,'' said the surrogate mother, who asked not to be identified to protect her family's privacy.

Andrea had explained about her medical condition early on, the surrogate said. ''At the very beginning, I did have some concerns, but after I met her, it was not an issue at all,'' the woman said.

The pregnancy has been a smooth one, and the child is slated to be born at Worcester Medical Center next month. Andrea and Chris will be in the delivery room as their surrogate's birth coaches. The families say they intend to remain close, and the woman said she may even carry another child for Andrea and Chris someday.

Andrea doesn't see herself as any special role model, but other young women who have been diagnosed with PH are already interested in her story, said Dr. Vallerie McLaughlin, a cardiologist who treats Andrea at the Rush Heart Institute in Chicago.

It's welcome exposure for an illness that few understand, including doctors, who often misdiagnose PH patients with asthma or anxiety. Studies show that many PH patients wait more than two years for a correct diagnosis.

''Many women get blown off when they complain about their symptoms,'' she said. ''We emphasize to people that you need to take your symptoms seriously and make some noise to get your doctor to take them seriously.''

Andrea says her next big challenge will be raising her new son or daughter. She still cannot do a few things, such as climbing steep hills, but otherwise she says she's ready for the sleepless nights and diapers. ''You don't really know what you are capable of doing until you're forced to do it,'' she said.