Rob Haneisen: Fighting for parenthood
The path to parenthood for Sharon Ralston and Andrew Aylesworth was filled with an abundance of luck - both good and bad, heart-rending decisions, dejection and in the end a huge gamble.
After suffering through four failed pregnancies, the Framingham couple had to deal with the rejection of their insurance company and what they describe as a legal loophole that all but stopped them from having another child.
Today in Boston, Ralston, 40, will testify about Senate Bill 485 before the Joint Committee on Financial Affairs to get a state law changed and expand mandatory infertility coverage.
Married in 2004, the couple learned during Ralston's first pregnancy that Aylesworth had an underlying genetic problem called translocation disorder. A healthy daughter named Maya was born March 19, 2005.
Aylesworth, 45, a marketing professor at Bentley University, had no health problems, but his chromosomes severely limited the chances of he and Ralston having another healthy baby or one that would survive pregnancy. With Maya, they were lucky.
For the next two years they struggled to have another child and learned exactly how lucky they were with Maya. The couple terminated two pregnancies because the birth defects were so severe on the developing fetus it would have not gone to full term, been born stillborn or likely die soon thereafter. Two other pregnancies ended in miscarriages.
"It was a heart-rending decision to terminate," Aylesworth said. "We are older and didn't think we had a whole lot of shots at this. We love our daughter very much and wanted her to have a sibling."
Their doctor told them they had a better chance for a healthy baby through in vitro fertilization of an embryo pre-screened for genetic abnormalities. They asked their insurer, Tufts Health Plan, for approval. It was denied, as were all appeals.
"We were shocked," said Ralston, who works as an immigration coordinator for UMass Medical School. "We had submitted all kinds of letters. I thought we had a really good chance."
The way state law is written and the explanation given by Tufts, according to the couple, is that because they were able to get pregnant they were not considered to have fertility problems.
According to state Rep. Peter Koutoujian, D-Waltham, chairman of the joint committee, the proposed law would redefine infertility to include women who get pregnant but cannot carry a child to term. Current law also requires a woman to try and get pregnant for one year before declaring her infertile. The new law would shorten that time period to six months for women over 35 and not start the clock over if they conceive and miscarry.
Because many couples are now waiting later to have children, which lowers their chances for success, more seek medical assistance, Koutoujian said. Having to wait another year under current law may be too long for some.
"I'll look to the experts for information, but...this (new) definition would allow some couples greater access to fertility treatment but it would not break open the dam. It's a very small amount of couples that suffer tremendously. But for those couples it is absolutely devastating," Koutoujian said.
A Tufts Health plan spokesman referred comment to the Massachusetts Association of Health Plans, which opposes SB 485.
"Basically, we should not be adding new mandates. We have a generous mandate in Massachusetts that serves the majority," said Association President Dr. Marylou Buyse. "This adds tremendously to the cost of care."
"I understand this is a very sympathetic case, but this is very problematic because of cost...It's not the way to improve health care and keep it affordable," Buyse said.
The couple talked about adoption, but with the help of generous family members they scraped together $18,000 and took one last shot with IVF.
Two embryos were implanted and they waited. To ensure that this was their last shot, Aylesworth had a vasectomy after the IVF "because I didn't want to deal with it again and neither could she."
Seven weeks into the pregnancy Ralston miscarried and lost one of the twins she was carrying.
"We had steeled ourselves from the beginning that we could wake up one morning and not be pregnant," Aylesworth said.
But the gamble paid off. On Nov. 6, 2008, Ryne (named after Chicago Cubs baseball great Ryne Sandberg) was born healthy.
It was during their battles with Tufts that the couple's IVF doctor at Brigham and Women's Hospital referred them to RESOLVE of the Bay State, an infertility advocacy group that pushed for the state to pass the nation's first mandatory infertility treatment law in 1987.
Some might say the way the law is written in Massachusetts limits who gets to be a parent and who doesn't based whether you can afford IVF.
It's a challenge Maya might have to face one day because she carries the same dislocated chromosome her father has.
"Anything that happens from this is too late for us. It's wrong but it should be fixed for Maya," Aylesworth said.
Rob Haneisen can be reached at 508-626-3882 or firstname.lastname@example.org.