Henrietta Toddler Thriving After Two-Month Stay in Intensive Care

May 15, 2002

After enduring the normal highs and lows of pregnancy, Jenn Brown was eagerly anticipating the arrival of her first child. Her enthusiasm, however, was dampened during a routine ultrasound just four weeks before she was due. The baby, doctors explained, had a 50-50 chance of surviving. To make matters worse, the baby's chances of survival plummeted to less than 20 percent soon after she was born.

That was in April 2001. Today, Jenn and her husband, Ted, of Henrietta, are the proud parents of Alexa Marie Brown, a healthful, happy 1-year-old. As part of its Miracle Weekend celebration June 1-2, Golisano Children's Hospital at Strong is honoring five children - including Alexa - as Miracle Kids. Each overcame significant health problems while being treated at Golisano Children's Hospital.

Alexa's Story

Jenn Brown was enjoying a trouble-free pregnancy until the ultrasound revealed that her baby had a congenital diaphragmatic hernia. The life-threatening condition occurs when the diaphragm - usually on the left side - has a hole in it that allows intestines to pass from the abdomen into the chest, resulting in underdevelopment of the lung.

Delivery was scheduled for Strong, because doctors knew the baby would need the specialized services and care found regionally only at the Neonatal Intensive Care Unit (NICU) at Golisano Children's Hospital. The NICU staff is a team of more than 150 doctors, nurses, technicians, respiratory therapists, and social workers devoted to caring for the most fragile and ill babies, both premature and full-term.

Alexa was born May 8, 2001, and was promptly whisked to the NICU, just down the hall from birthing center. A team of specialists, including neonatologists, pediatric surgeons, and pulmonologists, examined Alexa first. During the first hour, she was placed on a respirator and received blood pressure and fluid support. Within the first 24 hours, Alexa was placed on Extracorporeal Membrane Oxygenation (ECMO) to support her respiratory function. The Browns, who didn't get to hold their baby until she was 23 days old, wondered if she would survive.

"I told the nurses, 'Please take me to the NICU so I can see her before you do the procedure,'" Jenn says, adding that surgeons told her Alexa now had only a 10 to 20 percent chance of survival. "It was pretty dramatic."

For eight days, Alexa required ECMO, a form of heart-lung bypass for children. During that time, Walter Pegoli Jr., M.D., chief of pediatric surgery, repaired the hernia. The next day, because of the blood thinners necessary to use heart-lung bypass, Alexa developed a life-threatening abdominal hemorrhage, which required a second emergency surgery.

"The entire staff at the hospital was tremendous to us," Jenn Brown says. "Dr. Pegoli was wonderful. And Dr. Tim Stevens, the first neonatologist to care for Alexa in the NICU, was there as much as we were, which was pretty much 24 hours a day in the beginning."

Alexa was released from the hospital two months after she was born. This winter, she had one more surgery and a follow-up appointment. "We saw Dr. Pegoli and he examined her, and then he said, in a very kind way, 'Everything looks great, Alexa. I hope you have a nice life,'" Jenn says. "Those were the greatest words to hear. She's a very happy baby, a very energetic baby. She started taking a few steps when she was 10 months old, and her physical therapist is just amazed at what she does at her age."

The Browns have also used their experience to help others facing similar situations. Although they understood that ECMO might be needed to save their daughter's life, they could not fathom all that was involved. To offer support to parents of infants facing the potential need for ECMO, Ted Brown is creating a Web site to educate and support families. The site - www.ecmobabies.com - is dedicated to the staff at Golisano Children's Hospital. "Without them, our daughter would not have seen her first sunrise, fallen asleep in our arms, or looked upon us with the eyes of an angel," the Browns say.

Alexa's experience also will benefit other children in the future through expanded efforts at Golisano Children's Hospital. Her birth inspired research into the optimal time to deliver infants who have congenital diaphragmatic hernias.

"We just feel blessed to live in Rochester, in a city with the resources of a place like Golisano Children's Hospital," Jenn says.

Miracle Weekend Celebration

Miracle Weekend is always one of the most exciting times of the year for Golisano Children's Hospital. It includes two major events.

The Golisano Children's Hospital Telethon will be broadcast live from the hospital on 10NBC June 1-2. In addition, Miracle Weekend always includes the Stroll for Strong Kids, to be held at 11 a.m. Saturday, June 1, at Genesee Valley Park. Children's activities and registration will begin at 9 a.m. When finished with their "Stroll," walkers will be treated to a free lunch provided by Outback Steakhouse. There will be music by Gary the Happy Pirate, and many fun activities for the kids.

Participants are asked to raise money through sponsorship pledges from family members, friends and co-workers. Those who raise $75 or more in pledges will receive a commemorative t-shirt, and prizes will be awarded to the top fund-raisers. Last year, some 800 people took part, raising more than $80,000 for Golisano Children's Hospital. Pre-registration is required. To register for the Stroll for Strong Kids, or learn more about any Miracle Weekend event, call 585-273-5948.

In addition to honoring children such as Alexa, Miracle Weekend allows the hospital to raise funds that provide needed equipment for the children it serves, and items that make their stay a little easier.

Money raised will be used by Golisano Children's Hospital to buy equipment, such as preemie blood-pressure cuffs, and supplies that make hospital stays easier, such as IV pole wagons, videos and games, and sleeper chairs so parents have a comfortable place to rest when they stay with their children.

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