Technology, devotion for two tiny lives

“Their skin was like Saran Wrap, so transparent you could see every organ,’’ says their father, Pete Farrell, 34. Madeline’s heart stopped beating in the delivery room, and a doctor used two fingers, pressing on her chest for four minutes to resuscitate her. The identical twins were born with infections, underdeveloped lungs, and immature eyes that required laser surgery. They were placed in isolettes with humidifiers, ventilators, and feeding tubes.

Instead of spending her maternity leave nursing and burping and bundling, Amy Farrell spent it in the neonatal intensive care unit at South Shore Hospital. Molly remained there for four months and came home weighing about 5 pounds. Madeline spent her first 17 months in various hospitals, arriving home in June to delighted, anxious parents and a wary twin sister.

For the Farrells and parents of other “micro-preemies’’ — those born at less than 26 weeks’ gestation and weighing less than 2.2 pounds — the anxiety doesn’t vanish once the babies come home.

More than 50,000 micro-preemies are born in the United States every year, or about 1 percent of all births. That rate hasn’t changed, but their likelihood of survival has, thanks to medical advances and technological interventions. Micro-preemies frequently suffer from immature lungs, digestive and immune systems, neurological delays, infections, and cerebral hemorrhaging.

“All babies born that early will have some issues like delay in motor skills, language delay, increased attention deficit disorder, and they’re more prone to become sick with asthma-like symptoms,’’ says Dr. Eyad Zahr, a neonatologist at South Shore Hospital who treated the Farrell twins. “Because Molly and Madeline did not have bleeding in the brain, this is a huge plus for them. They will be followed for some time at Children’s Hospital, and all those services plus having such a great mom and father, that will help a lot.’’

These days, the Farrells’ cozy Weymouth home is a cross between nursery and medical ward. Half of the living room is a jumble of toys. Medical equipment is stacked in a downstairs nursery, in the mud room, in various corners. Going out with the toddlers requires the Farrells to assemble an emergency tracheostomy kit for ventilation in acute distress, a suction machine, an oximeter to measure the oxygen levels in the girls’ blood, two oxygen tanks, and a regulator.

Not to mention the diaper bag.

“I’m waiting for my medical degree to come in the mail,’’ Amy, 32, says as she gathered Molly in her arms.

The twins were due April 18, 2009. They were born on Jan. 6.

About a third of micro-preemies survive without ill effects, says Dr. Stella Kourembanas, chief and academic chair of the Harvard Program in Neonatology at Children’s Hospital Boston. (She did not treat the Farrells.) The other two-thirds will have mild to severe neurodevelopmental outcomes that can range from learning disabilities to intellectual deficits and motor disabilities, she says. As they get older, micro-preemies may have reduced lung function, increased incidences of asthma and hypertension, and decreased exercise tolerance. By the time the children are school age, doctors have a better idea of their long-term developmental potential.

Overall, premature births — babies born at less than 37 weeks’ gestation — have declined two years in a row, according to a new study by the Federal Interagency Forum on Child and Family Statistics. During 2007-2008, the number of premature infants dropped from 12.7 percent of all births to 12.3 percent, though the study does not separate micro-preemies from the later-term preemies.

Molly Farrell came home after five months, in May 2009. Madeline was to soon follow, but she developed pulmonary hypertension and was rushed to Children’s Hospital, where doctors performed a tracheostomy, or a surgical opening through the neck and into the windpipe, to help her lungs perform and heal better. She remained at Children’s for the summer and in September was sent to Franciscan Hospital for Children in Brighton for pulmonary rehabilitation. She was nearly a year and a half old when she finally arrived home June 14.

The next week, Amy Farrell wrote in her blog, www.micropreemiemommy.com: “Madeline is adjusting quite well and is just loving being home and rolling around on the living room floor and feeling grass for the first time and sitting in her high chair while we’re eating dinner. Molly was very excited the first few days and now I think she’s sort of wanting Madeline to end her visit and get on her way. After all, Molly has been the only child for over a year and now all of a sudden there’s a new person . . . mouthing her toys and taking up space in mommy’s and daddy’s arms.’’

Molly, too, has been in and out of the hospital. Last spring, because she wasn’t gaining much weight, she underwent cardiac catheterization to measure her pulmonary hypertension. Both girls remain on oxygen and, because they have immature digestive systems, have feeding tubes for meals and medication. Medical bills, covered largely by insurance, total more than $5 million, much of it to cover Madeline’s long hospitalization. Their insurance paperwork stacks up to over 6 feet.

Kourembanas says the typical micro-preemie, who comes home from the hospital at full-term age (meaning that the hospital stay is four to five months) will have between $250,000 to $500,000 in medical expenses.

The Farrells, who are paying off school loans and a mortgage, both work full time: Pete as a lawyer, Amy in risk project management for Bank of America. Because the girls are medically so fragile, a team of nurses and therapists come in during the week to care for them. Weekends, the Farrells are on their own. Their families — hers in Norwood, his in Duxbury — step in regularly.

On the one night a nurse told them to go out for dinner, the couple was halfway to the restaurant when they got a call: Molly had pulled her feeding tube out. They turned around and went home.

Molly had the house to herself for more than a year, and then suddenly a stranger appeared. It hasn’t been easy. One recent morning, Molly crawls over to Madeline, who is contentedly chewing on a toy. Molly grabs it away. Her parents admonish her. Madeline, unfazed, picks up another toy. Molly wants that one.

“Molly will cross-check her, like the Bruins,’’ their father says.

“Or she’ll use her for balance,’’ their mother says.

It’s a good thing, then, that Madeline is the bruiser of the two, sort of funny for a baby who spent her first 17 months in hospitals. She weighs 28 pounds to Molly’s 19.

“Madeline’s bigger because she was sedated for so long so she couldn’t get agitated and pull her tubes out,’’ her father says. “Her lungs were so severely damaged, so she needed to rest.’’ At the same time, she was being continuously fed through tubes. She hasn’t yet learned to crawl or walk, though Molly is all over the place, “cruising’’ though not yet walking.

Molly is talking, too, though she’s still at the “Dada’’ and “Mama’’ stage. A couple of weeks ago, a pulmonologist installed a speaking valve over Madeline’s tracheostomy, allowing her to babble and laugh. Last week, the Farrells got good news: Because Madeline is progressing well, her tracheostomy will soon be removed.

Zahr says that with babies born so early, there will continue to be issues. “The worst is behind them but there are still some challenges on the way,’’ Zahr says.

The phone rings. It’s a reminder to pick up Madeline’s medicine. They use two pharmacies: a regular one, and a compounding one where the pharmacist makes custom medications that are not commercially available. Another call: a doctor responding to Amy’s concern over taking the girls out in the heat.

In the mud room, oxygen tanks sit near the twin stroller. On the kitchen counter is a gift from Pete’s brother Tim: a bottle of Malbec “to sip once you put two babies to bed.’’ Nearby sits a package of coffee “to sip when two babies have you up at 5 a.m.’’

If a refrigerator door is a childhood scrapbook, the Farrells’ is already full. There’s a twopage list of 15 doctor visits during the summer months; those are just the scheduled ones. On the counter are two thick notebooks full of medical charts for each twin.

Since Madeline only recently came home, there is some make-up parental bonding to do. “She’s the night owl, so we spend a lot of time alone with her,’’ says Pete. “But there’s nothing better than holding them together.’’

He snuggles with both girls, tiny in his big arms. “This is a miracle,’’ he says. “These guys were off the cliff and the doctors grabbed them by the collar and brought them back.’’

Bella English can be reached at english@globe.com.