Audio Local doctors may have made a baby breakthrough (story audio) Photos Dakota Bier Dr. Robert Fisch Amber Lamosse View full slideshow (6 images) Resources Learn more about phenylketonuria from the National Institutes of Health PKU News Your Voice Join the conversation with other MPR listeners in the News Forum.

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Local doctors may have made a baby breakthrough
by Lorna Benson, Minnesota Public Radio
August 17, 2004

Nineteen-month-old Dakota Bier chews on his new car. Dakota was born healthy thanks to in vitro fertilization and a gestational carrier. (MPR Photo/Lorna Benson)

A rare disease makes it extremely risky for some women to have a child of their own. The condition is called phenylketonuria or PKU. Women with the disease are missing an enzyme that's essential to metabolize protein. Most can live a normal life if they follow a strict diet. But there hasn't been much hope for female PKU patients who want their own healthy, biological child. Now two Minnesota doctors say they've figured out a way around that problem. They successfully facilitated the first in vitro fertilization birth using an egg from a woman with PKU.

St. Paul, Minn. — Only a few hundred people in Minnesota have PKU. It's that rare. But the condition is life altering. A baby born with PKU will develop mental retardation within weeks, just from drinking breast milk or formula. The protein in the milk is poison to their system.

In Minnesota, all babies are tested for this disorder before they leave the hospital. That's how Judith Gresser found out that her daughter, Rayna, had PKU. It was 1975 and the disease wasn't well-known. Gresser was terrified after hearing the diagnosis, but doctors told her that Rayna would be okay as long as she was fed a special diet that restricted protein. PKU babies can tolerate small amounts of protein. In fact they need some or they won't grow. But it's also critical that they don't get too much. So Rayna's mom, Judith, took on the daunting job of tracking every little morsel of protein her daughter ate.

	Dr. Robert Fisch

"If I measured a half a cup of green beans. I had to figure out what she didn't eat. It wasn't just like okay she didn't eat it, throw it. I had to measure what she didn't eat and then figure out how many milligrams she had eaten," she says.

The diet worked and Rayna developed normally. At age 7 she started eating more protein rich foods like french fries. That made the protein levels in her blood go up, but doctors said as long as she didn't overdo it, she was probably no longer in danger of damaging her brain.

Still, they always warned Rayna that her PKU would never go away and as a result there was one thing in life she probably couldn't do. "The doctor would always say, 'You know what that means when you have PKU about babies?' And I said, 'Yeah, I can't have em.' They're like, 'No, you can have em. You're just not supposed to have them.' So I was always told that I could never have a baby," she says.

Doctors feared that if Rayna got pregnant, she would have a baby that was mentally retarded or had deformities. Her body just wasn't a good host because her blood was essentially toxic to a developing fetus.

Rayna didn't question her fate until her mid 20s when she married her husband, Melvin. Soon, she desperately wanted a child. She reluctantly went back on her strict diet from childhood in the hopes of getting the protein levels in her blood under control. That was the only way she could have a healthy baby. Rayna was given a special diet formula to drink, but it made her sick. So her doctor gave her pills to swallow instead. She was supposed to take 100 a day. After 70, she gave up.

	Dakota and his Grandparents

Rayna's next obvious choice was adoption and she probably would have started that process, if her PKU specialist, Dr. Robert Fisch, hadn't mentioned another possibility.

"I think that was very, very obvious that this was a good solution for a bad situation," says Fisch, a retired University of Minnesota pediatrician. For years he had been following advances in in vitro fertilization with interest. He was convinced that technique could help PKU patients have healthy children, if they found women willing to carry their babies. "I was positive that because of the mother, phenylalanine is the toxic; if you take out the toxic element, that the child should be good. That was it. That was it."

While the idea seemed logical, some of Fisch's colleagues didn't think it was a good idea. They were worried Fisch was replacing one problem with another. In vitro fertilization is expensive, costing at least $10,000 for one attempt. It often takes many attempts to achieve a pregnancy and multiple babies are common making the pregnancy much riskier. But Dr. Fisch found an ally in fertility specialist Dr. Jacques Stassart who says the medical establishment was behind the times.

"No. No. This can be done and it is not what you think. It is successful and we are going to act extremely responsible. And the key thing is that we don't want the cure to be worse than the ailment. But we are getting to the point where nowadays it shouldn't be," according to Stassart.

With Stassart on board, all Rayna needed was a gestational carrier, someone who would essentially be the incubator for Rayna and Melvin's fertilized egg. Typically that's the most challenging piece of the puzzle. But Rayna's friend Amber Lamosse made that part easy.

	Amber Lamosse

"I told Amber about it one day over e-mail or something and she offered to do it for me and I was you know, I thought she was just saying that. But she actually stuck to it and it was something that she wanted to do," she says.

Amber was 21 at the time and had an infant daughter of her own. She was very happy being a mother and wanted the same for her friend Rayna.

"I'm just thinking about helping somebody. I'm kind of a nurturing person and I talked it over with my mom and I kinda talked it over with my dad as well and you know they weren't thrilled with the idea at first. My mom's biggest concern was that I was gonna get attached to the baby because I'm a big baby person. But it wasn't a problem," Amber says.

It took nearly two years before Dr. Stassart was ready to perform the procedure. In that time Amber and Rayna had undergone rigorous psychological testing. Finally in the spring of 2002, Amber received Rayna's fertilized eggs. Ten days later she was scheduled to take a pregnancy test at Dr. Stassart's clinic, but on the way to his office Rayna and Amber were so excited, they stopped at a restroom and Amber took a home pregnancy test.

	Dr. Jacques Stassart

"It instantly turned blue or whatever it turns, so it said I was pregnant and I just dropped the thing and I ran out and I'm like, 'You're a mom!' And she like tumbled over me and we were crying and it was like, that's like one of my best memories of the whole thing," she says.

Nine months later, Amber gave birth to a boy. He was healthy to everyone's relief. And he looked like Rayna.

"First thing I noticed was the dimple on his chin. That was the very first thing I noticed. He had a ton of curly hair too, tons of it," she says.

Dakota is now 19 months old. He's had more tests than most babies his age and so far doctors say he appears completely normal. His gestational carrier, Amber, visits him every few months. She said thankfully she has no urge to mother him.

"I feel really at peace with myself and I feel like I've done you know my good deed to get me into heaven you know? I just, I love to hear Rayna talk about him and I like to see how Mel and Rayna both interact with him because ultimately I gave it to them."

Amber is a hero to Dr. Fisch. He says she proved that mothers with PKU do have another pregnancy option - one that offers them a better chance of having a healthy biological child.

	Happy Family

"I think again it's a step ahead. It's not the final step by any practical purpose, but it's a step and that's all you can do."

The cost of this procedure is still a big factor. Amber agreed to carry Dakota for free. But after she gave birth, Mel and Rayna decided to give her $10,000. Usually, unrelated gestational carriers charge up to $40,000 to carry a child.

There are also legal issues. In Minnesota, parental custody belongs to the birth mother, not the biological mother. Rayna had to adopt Dakota even though he was created with her egg.

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