Parents

After surviving a rare condition, twin girls are 'doing just awesome'

After losing a baby to miscarriage in January 2015, Sally Bailey felt stunned after learning in April that she was pregnant again. When she went in for her second ultrasound, she and husband, Brandon, discovered that she was carrying twins.

“It was kind of a light in the middle of grief. We were still grieving for the loss of the first kid,” she told TODAY. “We didn’t expect (twins) at all. But we were so excited about it.”

Courtesy Sally Bailey
After 56 days in the NICU, Paige meets her twin Ella for the first time.

After learning the twins were girls, the Baileys also received some upsetting news. Their girls were monochorionic twins, identical twins who share the same placenta, and they suffered from a rare condition called twin to twin transfusion syndrome, where twins share the same blood vessels.

“It was pretty devastating. Everyone gets pregnant and think this is going to be beautiful," said Bailey. "As soon as we found out that we had this condition we knew that wasn’t going to be the case."

Without treatment, the syndrome is almost always fatal, says Dr. Stephen Emery, who didn’t treat Bailey.

“It is a terrible disease,” says Emery, the director of the Center for Innovative Fetal Intervention at Magee-Womens Hospital of UPMC. “These twins are essentially conjoined; they are not conjoined in the chest or the hip or the head, they are conjoined by the blood vessels.”

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Twin-To-Twin Transfusion Syndrome: Moms join together to raise awareness

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Twin-To-Twin Transfusion Syndrome: Moms join together to raise awareness

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In twin to twin transfusion syndrome one twin essentially donates blood to the other. The donor twin becomes anemic, can’t produce urine, and fails to grow while the recipient receives too much blood and urinates too much. The recipient suffers from polyhydramnios, where too much fluid floods the amniotic sac.

Until recently, doctors could do very little to treat the condition, but now doctors have been using minimally invasive surgery and lasers to separate and cauterize the blood vessels and prevent the twins from sharing blood; this results in 65 percent survival rate for both twins. Bailey was a good candidate for the procedure and she and Brandon moved from Oklahoma City to Dallas to be closer to specialists.

While Bailey awaited treatment, the couple learned that Paige, the recipient twin, also suffered from pulmonary stenosis, meaning her pulmonary valve doesn’t open fully. Doctors believed Paige’s heart problem remained unrelated to twin to twin transfusion syndrome but knew she would need surgery after being born—anything from a heart catheter to open heart surgery.

"If this was going to save her life there was no question that we were going to do it," says Bailey.

But as Bailey prepared for her own surgery, something amazing occurred. The condition stopped worsening. It didn’t go away, but the doctors no longer thought surgery was needed.

“It was just an absolute miracle that the girls were able to survive this without having the surgery,” says Bailey. “These girls … fought so hard in my belly to survive.”

At 34 weeks Bailey went into labor and doctors delivered Paige and Ella via C-section. Doctors whisked both girls away — Paige to Children’s Medicine Center of Dallas to await her heart surgery, and Ella to the NICU. After two weeks, Ella went home with mom and dad while Paige remained in the hospital. The two couldn’t meet while Paige remained in the NICU.

Courtesy Sally Bailey
Paige Bailey recovering from a heart procedure. After surviving twin to twin transfusion syndrome, Paige suffered several medical setbacks that kept her in the hospital for two months.

“Honestly, that was probably one of the hardest things for me to deal with, is that they couldn’t be together for a really really long time,” says Bailey.

Courtesy Sally Bailey
Ella Bailey immediately after birth. While Ella spent only two weeks in the NICU, her sister spent two months as she waited for heart surgery.

While Ella grew stronger and gained weight, Paige waited for surgery. But doctors discovered she suffered from necrotizing enterocolitis, meaning parts of her intestine were dead. She underwent emergency surgery to clear out the dead tissue and doctors created an ileostomy, an opening in the abdomen that aids in ridding the body of waste. Then it was discovered she also had meningitis.

“We had a choice, to be down in the dumps all the time, or we could choose to cherish the moments we did have with Paige … to love her the way we needed to,” says Bailey. “We decided to approach this with positivity.”

Courtesy Sally Bailey
Sally and Brandon Bailey finally take both their twin daughters home from the hospital. The girls suffered twin to twin transfusion syndrome and survived.

At the end of February, Paige received a stent to open her valve. A few days later, she went home and was reunited with her sister. When she is older, Paige someday might need surgery for her heart, but doctors told the Baileys that Paige is "just a normal kid" and she shouldn't let her heart hold her back.

And she doesn't. She enjoys being cuddled and giggling with Ella. This past weekend, they celebrated their five-month birthday.

Courtesy Sally Bailey
Sally Bailey holds Paige and Brandon Bailey holds Ella. After two months in the hospital, Paige was able to go home with the rest of her family.

“We’re doing great. The girls are just doing awesome,” says Bailey. “Ella is goofy, funny, and active and curious. Paige is just sweet and gentle.”

A family member organized a fundraising campaign to help the Baileys with ongoing medical bills. You can donate here.

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