Winslet's journey: McKinney toddler fights a disease so rare, it bears her name

Patients rarely baffle worldly renowned doctors with their conditions. Winslet Seoighe did just that when she came into this world 17 months ago, and did so enough that they named a disease after her.

Winslet was released from Medical City Dallas Hospital on Friday, March 18, after undergoing a risky stem cell transplant that could alleviate the perplexing illness she's had since birth.

"Since they don't have a typical diagnosis, they've started calling it Winslet's disease," said Tracy Seoighe, Winslet's mother.

The road to discovery for the disease began before Winslet was born. Tracy was over 35 years old when she was pregnant. Doctors considered her pregnancy high-risk and hospitalized her with a fetal monitor for six days. The monitor, which measured Winslet's heart rate, showed that Winslet had a "Decel." whereas an infant's heart should beat well over 100 times a minute, Winslet's was beating only six times in a minute. The doctors performed an emergency C-section, saving Winslet's life.

She was alive but far from normal. Winslet had an enlarged heart, a liver three times its normal size, an enlarged spleen and vital organs that were shutting down. The biggest problem was Winslet only had 33 percent of the blood she should have had. Doctors referred to her birth as a "traumatic birth incident" and thought that she had massive fetal maternal hemorrhage that she had bled out the 67 percent. They soon realized Winslet's case was different: she wasn't producing blood.

"She makes red cells in the bone marrow, but they don't get out into the blood where they are needed," said Dr. Stan Goldman, a pediatric hematologist with Texas Oncology and Winslet's doctor at Medical City. "We think probably that she may have a never previously described mutation in one of the red cell membrane proteins that is very severe."

Goldman and other doctors at Medical City got a second opinion from renowned hematologist George Buchanan of Children's Hospital in Dallas, but still no answers. They sent her blood around the world for testing from the Mayo Clinic to Harvard to Johns Hopkins and even to a specialty lab in Israel and everyone agreed that it was a never before described red cell membrane failure.

Winslet stayed in the hospital for seven weeks and had to return monthly for blood transfusions, while doctors figured out what to do next. If they continued the transfusions, the iron would have built up in Winslet's system enough to cause her organs to fail from metal toxicity. The array of doctors recommended a stem cell transplant before Winslet could get to that point but there was no assurance that the transplant would cure her, forcing Tracy and her husband into a life-changing dilemma.

"We didn't know which road to take, because neither road offered us any guarantee," Tracy said. "That was the most emotional and difficult time for her dad and I. It was the hardest decision either of us ever had to make."

Tracy said that though the doctors recommended the transplant, it was still a scary decision because they couldn't say with 100-percent assurance that Winslet's body would start producing blood after the procedure.

But things started to turn around once they decided on the transplant last fall. Doctors took a blood sample and identified six particular antigens, or markers, and sent the profile to the National Marrow Donor program in hopes of finding a perfect match. They found such a match within two weeks, a discovery considered almost instant for a search that often lasts months.

Winslet had chemotherapy 24 hours a day, for eight days prior to the transplant, so that her entire bone marrow system and immune system was killed. The actual procedure, which Tracy described as benign and uneventful, took place on Feb. 3 of this year. It involved hooking up a bag of the donor's stem cells to Winslet's IV, from which gravity then dripped the cells into Winslet's veins, and because the cells have markers, they migrated into her bone marrow to engraft.

Winslet spent 44 days in the hospital as her immune system recovered. Tracy, her husband and Winslet's older brother, Nolan, were by her side most days. Winslet's dad took a leave of absence from his job to be with her. Doctors won't know if the transplant was successful until Winslet experiences full engraftment, and her white blood cells, red blood cells and platelets return to normal levels.

"Her engraftment has happened much faster than they expected," Tracy said. "She's doing great, so we are just praying and keeping faith that she will continue to do well."

Winslet hasn't had a transfusion since March 8, and if she gets to April 8, it will be the longest she's ever gone without one. Tracy added that her blood work looks better than ever. On Monday, Winslet's hemoglobin had reached a normal level for the first time since birth, a benchmark Tracy said the family was "cautiously celebrating."

Tracy's brother, Tim Roach, said he admired his sister and her family for how they've handled Winslet's situation. He is also optimistic about his niece's recovery.

"So far, what the doctors suggested seems to be working," Roach said. "We remain cautious because it takes some time before you know how successful the transplant will be, but all indications so far are very positive."

Perhaps no one is as happy about Winslet's progress as her brother. Three-year-old Nolan has been there for Winslet since her birth, going to most of her doctor appointments and visiting her during her transplant and recovery period. He finally has his sister back.

"He is thrilled that she is back home," Tracy said. "I almost can't even put into words what it's like to see them together again. It feels like they have a secret language. They're both very happy to be together."

As Winslet continues to recover and her blood cell levels increase, her mounting medical bills follow. The Seoighes have partnered with Children's Organ Transplant Organization (COTA) to raise donations for Winslet's continued treatment. Out-of-pocket transplant-related expenses for the family are estimated at $500,000. People who want to help Winslet by making a donation should visit www.cotaforwinslets.com.

Despite her family's fragile situation, Tracy said she wants others to be as lucky as they've been. She encourages women to also visit www.bethematch.org, where they can get information about donating their umbilical cord if they're pregnant and whether the hospital where they're delivering at accepts cord blood donation. People can also register on the site to be a bone marrow donor, a service Tracy said is specifically needed for minorities, as they and people of mixed race who need a transplant often cannot find matches.

Winslet is staying with her family in a hotel near the hospital until Tuesday of next week. At their house, carpets are being ripped out and all surfaces (blinds, floors, air filters, walls) are being sanitized. When the family returns, they will not be able to run a vacuum around Winslet for two years, and must clean daily so that dust and bacteria won't compromise her health.

Winslet's road to recovery and a normal life may have just begun, but it's a road her family is thankful to be on after their long ordeal.

"This journey has really made us embrace our blessings and made us grateful for what we have," Tracy said. "That has been the biggest change for us through all of this, and it's what we will continue to focus on."

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