The Lance Family

“An emotional shoulder to lean on…”

Jessica Lance was the first-time mother of a 4-month-old infant when she was pleasantly surprised to discover she was pregnant with her twin sons, Gavin and Gabe.

Thus began a frightening journey to not only deliver the boys safely but help them grow and thrive into their childhood, with the support of the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

“The twins were diagnosed with twin-to-twin transfusion syndrome at 16 weeks gestation. The mortality rate is 100 percent if untreated,” Jessica recalled.

Twin-to-twin transfusion syndrome causes too much blood flow from the placenta for one baby and not enough for the other. Jessica said she and her husband, Tim, were given several options, two of which were terminating the pregnancy or letting nature take its course and delivering them stillborn.

“We chose do whatever we could to help them survive. They were tiny people with names and personalities already. Gavin was laid-back and Gabe was feisty,” Jessica said.

They tried two amnioreductions at 16 weeks and 18 weeks to remove excess fluid from Gavin but “both were Band-Aids on a bullet wound,” Jessica said. “The disorder had progressed too far and we were going to lose the boys.”

Jessica and Tim then decided to undergo experimental surgery for the twins called selective fetoscopic laser photocoagulation, which uses a small camera to seal blood vessel connections in the placenta.

“We were given a 90 percent chance of bringing one baby home and a 60 percent chance of bringing them both home. While it was too close to a 50-50 shot, losing them was not an option we were willing to accept,” Jessica said.

“Twenty-four hours after surgery, there were two beautiful little heartbeats.”

Jessica was then on strict bed rest and medication to help reduce the risk of preterm labor. At 30 weeks, however, Jessica had massive internal bleeding caused by a placental abruption.

Gavin and Gabe were delivered via emergency cesarean and were not expected to survive.

“They were not breathing on their own and had aspirated and ingested a large amount of my blood in the womb. Despite all the odds, they came home at just 35 days old from the NICU,” Jessica said.

They were diagnosed with grade IV brain bleeds and a traumatic brain injury called periventricular leukomalacia (PVL). Their neonatologist explained to Jessica and Tim that due to their PVL, Gavin and Gabe would likely have cerebral palsy.

“We were just glad to finally bring our babies home. These were the little boys we had been fighting for

all along,” Jessica said. “Fast forward a year and the signs started coming: gaining skills only to lose them, feeding difficulties, difficulties gaining weight, stiff muscles.”

In addition to their cerebral palsy, a long list of diagnoses followed for the boys, including gastroesophageal reflux disease, global developmental delays, laryngeal clefts, bilateral hernias, chronic ear infections, plagiocephaly and torticollis. Then came the equipment: bilateral ankle and foot orthoses, knee immobilizers, ankle immobilizers, hand braces, resting hand splints, j-splints, wheelchairs, gait trainers and so on.

The twins require a long list of medications and various specialists and therapists to treat their conditions, from occupational and speech therapists to neurologists, urologists and cardiology specialists.

“It’s truly never-ending,” Jessica said.

When the twins were 1 year old, they enrolled in DSCC’s program. Since then, Jessica says DSCC and their Care Coordinator, Robin, have provided invaluable support and assistance.

“They have been an emotional shoulder to lean on when I need to vent frustrations or grieve about a new diagnosis or surgery/procedure” she said.

DSCC has also helped reimburse the family for travel expenses related to Gavin and Gabe’s cerebral palsy appointments and paid for new frames for Gavin’s glasses when insurance denied the expense.

“DSCC has helped with purchasing accessories and equipment that insurance denied that greatly benefit the twins’ mobility and quality of life,” Jessica said. “They’ve helped connect us to various grants for funding and have taken pressure off of myself and my husband when it comes to contacting medical facilities and practitioners regarding services and approvals and payment.”

Robin also helped facilitate the delivery of holiday baskets for the family of seven and gifts through various charity organizations when the family struggled financially.

“DSCC has also connected us with other special needs families going through similar struggles,” Jessica said.

Today, Gavin and Gabe are 4 years old and their parents’ pride and joy.

“The twins have taught us nothing short of unconditional love,” Jessica said. “Even though we face many challenges, with the support of family, friends, and organizations like DSCC (encouraging) us, we are able to help them continue to grow up happy and as healthy as can be.”