Family has positive NICU experience after enduring difficult pregnancy and the loss of one twin

Teddy bear in the sunlight of a nursery

We all hope our baby will be born healthy, but sometimes nature takes over and throws us a curve we’re not expecting.

Heather T. and her husband Billy knew their baby was going to need care in the Salem Health NICU due to a high-risk pregnancy.

Pregnant with twins, Heather was diagnosed with twin-to-twin transfusion syndrome, a rare condition where identical twins share a placenta but receive unequal amounts of blood and nutrients.

One of the twins ends up being what’s called a “donor” twin and gives its nutrients to the other “recipient” twin, resulting in one twin fetus being much larger than the other.

“I felt like I might be pregnant with twins before it was even confirmed by the ultrasound,” said Heather. “So it wasn’t a complete shock when we saw two little heads in the ultrasound done at 19 weeks.”

After diagnosis, ultrasounds were performed twice a week at the Salem Health Maternal-Fetal Medicine clinic so doctors could continue to track the severity of the condition.

At 23 weeks it was determined that both babies were at risk, so Billy and Heather were referred to specialists in Kirkland, Washington, for in-utero surgery.

Performed at one of only ten hospitals in the country that do this type of surgery, the hope was that they could save one or both babies by using lasers to coagulate the blood in several of the connecting vessels.

Unfortunately, the larger recipient twin, who Heather and Billy had already named Kaitlyn, didn’t survive, but the prognosis for her much smaller twin sister, Emily, was good.

Heather’s water broke at 26 weeks and she was hospitalized at the Salem Health Family Birth Center for three weeks, allowing the baby time to develop further before being born.

She was born 11 weeks early at 29 weeks, weighing 2 pounds, 8 ounces and was renamed Kailey (a combination of Kaitlyn and Emily) in memory of her twin.

“The nurses in the Salem Hospital Family Birth Center were especially comforting to us during the bereavement process of losing Kaitlyn,” said Heather. “They took a mold of Kaitlyn’s tiny hands and feet and gave it to us as a keepsake. This is something we’ll always treasure.”

After birth, Kailey’s condition progressed as she continued to grow and develop under the expert care of the NICU neonatologists and nurses, and after two months she was able to go home.

“It was definitely a hard time for us, but we never doubted Kailey was receiving the best care possible,” said Heather. “The NICU nurses always kept us well-informed of her condition and made us feel so comfortable. They had a way of always being so positive, which helped us get through each day.”

Kailey continues to do well and her progress is followed closely by her doctor as well as a nurse assigned to her case through Polk County Public Health and the Babies First program.

The nurse visits Heather and Billy's home once a month to do developmental screenings and assist with referrals as needed. In addition, an early childhood specialist from Willamette ESD’s Early Intervention program visits bi-monthly to monitor and observe Kailey’s development.

Even though she is small for her age, Heather and Billy say Kailey holds her own against big sister Jenae.

The family is now expecting again and is eager to greet the newest addition to the family due in March, 2012.

Heather has also become a member of the Salem Health NICU Patient Advisory Council (PAC) where she represents the voice of the community and helps formulate hospital policies and procedures.

She says her experience with the NICU prompted her to become involved and give back.

She hopes her involvement will make a difference in the lives of other NICU patients and their families by allowing the hospital to deliver the highest quality care possible.

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