Two perfect reasons to pay it forward

GetMediaPreview-2In 2008, Katie and Paul Litterer were living in New York City and expecting identical twins. When Katie was 26 weeks pregnant, they bought a house near Boston to be closer to family. The following week, Katie went into early labor, resulting in an emergency C-section and the premature birth of their daughters. Their new house would remain empty for months.

Sophie arrived first at a tiny 1 pound, 15 ounces and let out a cry. Maddie followed her sister at an even tinier 1 pound, 10 ounces. “I didn’t hear anything,” Katie remembers. “They just ran out of the room with her.”

Slowly growing stronger

After some initial big hurdles, Sophie slowly improved and was released just before reaching four months of age, free of oxygen and feeding tubes.

Maddie had a tougher time. She spent those first four months at two hospitals in New York battling severe respiratory disease made worse by a fungal infection, several bouts of pneumonia and unrelenting acid reflux. “We had some really difficult conversations during that time,” Katie says.

When Maddie stabilized, her doctors suggested a transfer to the Neonatal Intensive Care Unit (NICU) at Boston Children’s Hospital to enable the family to move to the house that was waiting for them. Katie, Paul and Sophie followed the ambulance the entire way from New York to Boston.

Maddie was eventually released at nearly seven months old, with around-the-clock oxygen, severe reflux, a feeding tube (g-tube), a daunting medication regimen and extensive home nursing support.

At home, she developed pulmonary hypertension and was readmitted to Boston Children’s just seven weeks later. “Once again, we were really lucky we didn’t lose her,” says Katie. After six more weeks, Maddie returned home for good, but continued to need oxygen, a g-tube and home-care nursing for years to come.

Sophie, Katie, Paul and Maddie on the girls’ first birthday.

Paying it forward

Katie is extremely grateful for the care and support she and Paul received from friends and family during Sophie and Maddie’s journey. She admits that there were some disappointments as well. “Despite the outreach of so many, we felt the absence of others and didn’t understand their silence or infrequent contact,” she says.

Over time, Katie and Paul came to realize their crisis was also traumatic to their friends and family, which may have explained their inability to reach out and help. “Many people simply don’t know how to best support someone in crisis. They’re scared, too,” acknowledges Katie. “I want people to know that even if they’re scared, they can help a family in crisis.”

Katie is using her valuable insights to give back. As a member of Boston Children’s Hospital’s Family Advisory Council — a team of committed parents who lead and promote family-centered initiatives at the hospital — Katie is helping to improve other families’ experiences. She has worked on many projects during her five-year tenure on the council, most recently providing input on the construction plans for a new NICU, along with other parents.

Seven years old and “perfect”

Between the two of them, Sophie and Maddie have had a total of 11 surgeries to date. With hard work and the right help, the girls have overcome significant developmental delays and a host of medical challenges.

Now age 7, Sophie and Maddie are seen by eight Boston Children’s specialists on a regular basis and still use home oxygen when ill. Maddie also receives support services at school.

GBM_0467(1)“I’m so proud of them for having walked strong in their own shoes to this point,” says Katie. “They’re a couple of pistols with an incredible zest for life. They’re happy and adventurous, and at the same time, they understand that they may have limitations. They’re wise beyond their years, and they’re just perfect to us.”

FamilyAdvisoryCouncilAt Boston Children’s Hospital, we recognize that our patients and their families are the experts on their health care experience. Our Family Partnerships program offers different opportunities for patients and families to get involved and impact patient care.

Learn more about Family Partnerships at Boston Children’s.