Scars and All

The scars on the little chests of the Hogan children – Hestan 5, and Brynlee, 1 – serve as constant reminders of what they have been through at such a tender age. Between them, they have had seven major operations. Their parents have seen Hestan resuscitated right in front of them. They depend on the medical staff at Cook Children's and modern technology in hopes their babies will live into their 30s or beyond.

The Hogan parents, Melissa and Jeremy, value every moment of their time with their children and have a profound respect for life and all of its blessings. Scars and all.

"I can't imagine either one of my kids being any different than they are right now," Melissa said. "I would love to see them without scars on their body. But that wouldn't be them."

Melissa and Jeremy were the normal small-town couple. They grew up five hours away from each other. Melissa grew up in Grandfield and was going to college when Jeremy became a basketball coach in her hometown. "My dad was a football coach and took Jeremy under his wing," Melissa said. "We met that way and fell in love."

Their perfect life together became even better when they learned Melissa was pregnant.

Everything seemed to be normal during Melissa's pregnancy and all seemed to be well after the birth of their son, Hestan. He stayed with the family for a couple of hours and was breastfed by Melissa. After he was taken to the nursery at the hospital in Wichita Falls, Hestan's condition began to change. Quickly he was taken for an X-Ray.

Hestan became progressively bluer overnight and his pediatrician, Kenneth Sultemeier, M.D., stayed in the room with him all night watching his decreasing saturations and waiting for the cardiologists from Cook Children's, who visit twice per month, to arrive at the hospital in Wichita Falls. When Cook Children's cardiologist , arrived, Dr. Sultemeier asked her to come and evaluate the patient and perform an echocardiogram.

Dr. Roten used her expertise to diagnose that one of Hestan's heart pumping chambers, called ventricles, was severely underdeveloped. This is known as a single-ventricle defect (Hypoplastic left heart syndrome). Transport was arranged to take Hestan to a tertiary care center.

Following a surgery at another area children's hospital, the Hogans began follow-up care at Cook Children's. Vincent K.H. Tam, M.D., director of Cardiothoracic Surgery at Cook Children's, replaced Hestan's shunt and Dr. Roten took over his care. By the time he was 4 years old, Dr. Tam operated on Hestan three times.

At 3, Dr. Tam performed the palliative phase of three operations for patients with functional single ventricle – the Fontan Procedure – on Hestan.

Prior to Hestan's operation, Melissa learned she was pregnant. This time with a little girl who would be named Brynlee. As a precaution, Melissa received a fetal echocardiogram from Dr. Roten at Cook Children's. The tests showed that Brynlee's aorta was large and she also had a single ventricle.

"They said it was kind of like lightning striking twice," Melissa said. "Well to us, it struck twice."

While still impacted by the news, the Hogans were better prepared with the birth of their second child. Brynlee was born at Harris Methodist Hospital and immediately taken to Cook Children's where she received her first operation.

Now Brynlee has begun a similar path as Hestan. Brynlee was operated on twice in 2007 and will eventually go through at least one other surgery (the Fontan Procedure). In a six-month period, the Hogan family watched as their children underwent three heart surgeries in only six months. Brynlee's next surgery is scheduled for 2010.

"They are the sweetest family," Dr. Roten said. "After she learned about Brynlee, I remember Melissa crying her eyes out. She was sobbing. The family was pretty devastated. But they are such a strong family. They spoke at our Heart and Soul Ball. The kids were so cute. The Hogans spoke and everyone was so touched by them."

Hestan stole the show at the Heart Ball dancing to almost every song and when his father spoke, Hestan led the cheers with his arms raised, jumping up and down and cheering. The Hogans spoke to those in attendance and said that while this is difficult for their family, they realize 20 years ago both children would have died in infancy. They said looking at their happy children is a blessing to the advances in cardiac surgery.

Melissa said the scars over her children's bodies look like road maps because of the various procedures. But she said her kids could not be stronger or happier emotionally. They look at a visit to the doctor as just part of their routine. And heaven help the photographer who asks if the family wants to touch up their children's scars.

"There was a time where it seemed like we cried forever," Melissa said. "Then a certain peace came over me. I thought, ‘They will have matching scars. One won't be different than the other.' It's something they will both deal with together. It will be something they always share. Now it's funny. They argue over who has the bigger scar."

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