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In Peter's Memory

Burke couple works with Inova Health System to start a program for families of babies diagnosed with terminal illnesses.

Just 20 weeks into the pregnancy of her fifth child, Judie Grabski received the diagnosis every mother-to-be dreads. A routine sonogram in late July 2004 turned up some abnormalities.

"They knew there was something wrong, they just didn’t know what it was," said Grabski, of Burke.

After another sonogram and drawing of amniotic fluid, the doctors were more clear: the baby, Peter Grabski, had Trisomy 13, a chromosome disorder more rare than Down Syndrome, meaning he had an extra 13th chromosome in every cell in his body. The prognosis was grim.

"As the medical community puts it, it’s not consistent with life outside the womb. There’s no hope," said Mike Grabski, Judie’s husband. The couple has lived in Burke for five years, and their children, ages 5 to 17, attend Nativity Catholic School and Lake Braddock Secondary School. When given the diagnosis about their son, the Grabskis used any resource available, including hours spent on the Internet, to learn what the future held for their family and their son.

"We found the information to be extremely variable and not reliable. There’s an awful lot of personal opinion and false hope that is conveyed as fact," said Mike Grabski. "(There are) pieces of information we had to work pretty hard to find and that a lot of people could benefit from."

The Grabskis are hoping to use their information and experiences to make other couples in similar situations aware about living with the diagnosis of terminal disease in an infant.

WORKING WITH the Inova hospitals, the couple wants to see a Fetal Concerns Program started, which offers information and support to parents of babies who have been diagnosed with terminal diseases.

"Understanding that you can have a baby and you can love your baby, even if it’s not going to be a long life, or the life you’d planned out … in the first place, if that’s what you want, don’t be afraid of it," said Mike Grabski. "We want to provide information for people so they can make that determination themselves."

Inova Fairfax Hospital is in the early stages of compiling information to put a Fetal Concerns Program together. Jennifer Sedlmeyer, director of the Department of Perinatal Outreach, said the hospital had been interested in starting the program for a while, but the interest of the Grabskis spurred the efforts along.

"We’ve known … families need to be better connected with resources in the community," said Sedlmeyer. "(They) just kind of reinforced how important a program like this is. We’ve tried to work together, and we’ve appreciated their input."

The hospital recently hosted a conference with representatives from the Medical College of Wisconsin, which has already started such a program at several of its hospitals. Sedlmeyer said one in 28 babies born has an anomaly of some sort, and the Fetal Concerns Program would offer access to several nurses who could be dedicated to families in a similar situation to the Grabskis.

"For families going through an experience being told their baby has an anomaly or a fatal diagnosis, there are a lot of different things to navigate. (We) would serve as a navigator, offer to connect them with resources," said Sedlmeyer.

Inova Fairfax is still reaching out to its staff to gain more information about how the program would take shape, but Sedlmeyer said having the Grabskis as vocal partners has helped the cause.

"We can explain to people what we’re trying to accomplish, but when they talk about their experiences, it drives the point home," she said.

ORIGINALLY FROM Buffalo, N.Y., the Grabskis came to Virginia for Mike’s work for the Department of Defense. The couple was married in 1986 and baby Danelle arrived two years later, followed by Madelaine, Lydia and Jonathan. Judie Grabski discovered she was pregnant again in July 2004. The diagnosis of Trisomy 13 followed so soon afterwards, the couple initially didn’t have time to take it all in.

"As a family, we sat on the couch for hours, and we talked and we cried, and we all talked about how we felt, what we were thinking," said Mike Grabski. "(We were) kind of guessing at what to expect, because we really had no idea what this was going to be like."

Doctors told the Grabskis that they didn’t expect the baby to live to birth, or much long after that. The family had already decided to carry the baby to term.

"The recommended course of action was termination, and for us that was not an option. The phrase we had between ourselves was faith and trust, have faith that this is going to work out and trust that this is the right way," said Mike Grabski.

On Dec. 13, 2004, Peter Grabski was born, with birth defects due to the Trisomy 13. However, the fact that he was alive was a small miracle to the family and the staff at Inova Fairfax Hospital.

"It was amazing, and (the doctors) were like ‘We don’t know what to tell you,’" said Judie Grabski.

AFTER INITIAL concern about Peter not begin able to breathe, he began to breathe normally, had a healthy heartbeat and was able to go home the day after being born.

The family took turns holding him around the clock, because they didn’t know how long he might live.

"It was hard to get used to, (instead of) waking up at night because you hear a sound, it’s waking up because you don’t hear a sound. We got used to listening for the silence instead of the noise," said Mike Grabski.

On Jan. 22, Peter died in Judie Grabski’s arms, after 39 days of life. The family traveled to Buffalo to bury him in a small grave. Shortly after returning, they were contacted by one of the delivery room nurses, who said she had been interested previously in working to establish the Fetal Concerns Program at Inova. The Grabskis said they were on board.

"There’s a lot of people who have a diagnosis of some kind of abnormality or some condition that makes it a high-risk pregnancy. People need to know what it is, what it means for me, what it means for my baby," said Mike Grabski.

The family established the PTG Fund, in Peter’s honor, to raise financial support for the program, and Inova is also on board, hoping to incorporate the program into its existing Neo-natal Intensive Care Unit resources.

The Grabskis have spoken with other staff from Inova’s Ob/Gyn division, and recently attended a conference in Fairfax where they spoke with the director of a similar program at a hospital in Wisconsin, one of only several in the country.

Their hope is that the pain they experienced as a family can help others facing similarly challenging times.

"Whether you terminate or (the baby) dies, there’s still a lot of emotional scars for many people. It’s still a loss, you still have to deal with it," said Mike Grabski.

"Peter brought a lot of awareness that babies can have short lives, but short lives can be complete lives."