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Meriden Mom to Run Hartford Marathon in Memory of Her Two Children

Marissa Van Hennik's family and friends prepare to run the October 15th Hartford Marathon to raise awareness about the condition that took the lives of two of her babies.

The following article first appeared on Meriden Patch.

Marissa Van Hennik, a 1996 Platt High School graduate, is running this year's Hartford Marathon with friends and family to raise money for the infant-health charity March of Dimes – in memory of her two children whose lives were taken by a rare disease.

Van Hennik wasn’t sure at first about telling her story, but after opening up to friends and family, the self-proclaimed “quiet girl” soon discovered that discussing her ordeal would bring her the most comfort. Twirling the silver charms on her necklace marked “K”, “M” and “V”, Marissa told Patch the story of her family.

Marissa, a physician's assistant in Meriden and Waterbury who has been married to fellow Platt graduate Jaime Van Hennik since 2004, first became pregnant three years ago with her son Kellan Red.

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“It was a typical pregnancy,” she said, or so it seemed. But at the time Marissa and her husband did not know that Jaime had a rare antigen that is present in about 9 percent of those with European heritage according to the Red Cross and 2 percent of African Americans that he passed on to Kellan.

Eerily, this antigen system went by the name of “Kell.”

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“We wanted an Irish name for our child and picked the name Kellan out of a book...it was truly ironic when we discovered that the name of the antigen was Kell,” she said.

The Kell Antigen

For those who have it, Kell is an antigen present on the surface of red blood cells, one of many antigens on the cell that designate blood type for each of us, according to the National Center for Biotechnology Information.

When blood carrying the antigen enters into the system of a person who doesn't have the antigen, via a transfusion, or sometimes, like in Marissa's case, by carrying a child who is Kell positive, that person's body develops antibodies to attack the antigen as a foreign invader.

This kind of attack can happen to any fetus with a different blood type than his or her mother. But it is most dangerous for fetuses who are Kell positive.

Knowledge of the Kell antigen has been around for only about 60 years, and according to Marissa it is still not well-known. Some historians have recently posited that British King Henry VIII, known for having many wives and mistresses in an attempt to produce a male heir, carried Kell, believing it could be the reason he had so much difficulty fathering children.

“I was tested in the beginning of my pregnancy for any abnormalities in my blood...Kell was there, they just missed it,” Marissa said.

“The Doctor Advised Us to Not Have Any More Children”

Kellan was born healthy, and was two years old when the Van Henniks first learned about the Kell Antigen.

Marissa had become became pregnant again. At six months in, doctors could not hear the baby's heartbeat, and had her deliver the child stillborn.

The couple had an autopsy preformed on the child, who they had named Mannix, where they learned that he was ultimately attacked by the Anti-Kell antibodies she had built up during her pregnancy with Kellan.

Doctors told the Van Henniks that the Anti-Kell antigens built up from the exposure to Kell-positive Kellan treated Mannix as a threat and fought against him; ultimately breaking him down through severe anemia. It's common for the first Kell-positive pregnancy to not be adversely affected by the mother's immune system, but subsequent pregnancies often are.

“We didn’t know what to do and our doctor advised us to not have any more children,” Marissa said.

Discouraged by the advice, Marissa took her concerns and curiosities to the internet. Feeling bolstered by other parents' success stories on websites such as www.babycenter.com, the Van Hennik’s sought out a second opinion at UCONN’s High Risk Department of Maternal Fetal Medicine.

“The staff at UCONN were much more positive and confident they could manage the pregnancy with continual sonograms and in-utero blood transfusions,” she said. So the couple tried once more.

She was due again this October 13. Yet again at 6 months in, problems arose.

“The doctors felt that because baby Vivian seemed so active they would wait to give her the first (in utero) transfusion," Marissa said.
"Only it was too late and by the time they did, her blood count was already too low.”

Marissa delivered Vivian in June and she died four days later after two more blood transfusion attempts.

“We Wondered Where to Go from Here”

Feeling down but not out, Marissa and Jaime have been searching for other options.

The couple has been researching pre-implantation genetic diagnosis (PGD) in which the couple would use in-vitro fertilization and then take a cell from each embryo and send it to a Chicago lab to be tested for Kell.

If one is Kell-free they would consider having it implanted in her uterus.

“People disagree with this type of testing because they feel like it’s going against nature," Marissa said. "But we are not trying to create a designer baby...just trying to find an egg not affected by Kell.” The couple hasn't decided whether or not to take this course, partially because of the expense involved in the IVF and the PGD testing, which together can range in the tens of thousands of dollars.

Marissa and Jaime had discussed surrogacy but the doctor advised them against it, citing a possible transfer of Kell, and thus Anti-Kell antibodies, to the surrogate.

“Being Able to Talk About it Is Important”

Besides online support groups, the Van Henniks are also attending a bereavement group in Woodbridge.

“It’s only us and another couple but that’s all there is out there and I benefit from talking about it,” Marissa said.

She hopes that by exposing her story to others, families like hers won’t feel so alone in their ordeals. And her friends have been invaluable in making sure she doesn't feel alone in hers.

“My friend Jen called me one day and asked if she could run the Hartford Marathon in honor of Mannix and Vivian and I realized it would also be good for me mentally and physically to get back into shape,” Marissa said.

She started training and built a website through the March of Dimes so friends and family could help donate to the cause of fetal and child health. (To read a little more about Marissa and/or donate click HERE.)

On October 15 – two days after she was to have had her child – Marissa, who just moved from Meriden to Cheshire, will join her fellow 1996 classmates Jen Markoja, Karen Ruszkowski, Pam Zigmunds, her mother-in-law Ellen Van Hennik, friend Alice Ruzkowski – all of Meriden – as well as friend Keri Smith at the starting line.

“I am so touched by the people who reached out and donated," Marissa said. “The medical community lacks understanding of this condition and my hope is to bring my story to the public so something can be learned from all of this."

Have your own story of tragedy turned triumph? Contact Local Editor Jason Vallee at Jason.Vallee@patch.com or tell us in comments below.

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