Local baby shows strength during multiple surgeries

Seven-month-old born without pulmonary artery

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Matthew King has a way with the ladies. He flashes his big grin and round eyes and they are hooked. The 7-month-old has had plenty of opportunities to charm area nurses. Born without a pulmonary artery, Matthew has been in a hospital almost his entire life.

Normally, pregnancy lasts roughly 40 weeks. Matthew was born at 32 weeks gestation, and weighed 4 pounds and 1 ounce.

"That's actually pretty good for being only 32 weeks," said his mother, Terri King.

He was premature but everything seemed fine at first.

"He was four days old before we knew anything was wrong at all," Terri said.

That was when one of Matthew's doctors heard a heart murmur. A consultation with a specialist ended with a diagnosis of pulmonary atrisia, the absence or disappearance of the pulmonary artery.

He had been born without even so much as a start of a pulmonary artery, the artery that conducts venous blood from the heart to the lungs, and no one knows why.

Terri, 45, at first questioned whether her age could be a reason but was told it had nothing to do with the heart condition. She had been in for all of the prenatal tests, including one test designed specifically to test the baby's heart and make sure everything is developing correctly. All the tests were normal.

He was born at Summerlin Hospital on May 10 but transferred to Sunrise Children's Hospital on May 14 in order to be closer to area heart specialists. He spent time at Sunrise gaining weight and getting stronger for the surgery doctors agreed he would need. By July 10 doctors ordered that he be transported to Stanford University Hospital in Palo Alto, Calif., where he could be seen by Dr. Frank Hanley, who developed the type of surgery that could save Matthew's life.

Northern California became home to Matthew while doctors at Stanford tested to make sure the original diagnosis was correct, performed the surgery and then helped him start his recovery. The Kings borrowed an RV from family and set up temporary "home" in a parking lot near the hospital during the months he was there.

Matthew had multiple defects that had to be repaired. Aside from the missing pulmonary artery, a hole in his heart caused two chambers to exchange blood with and without oxygen between each other freely, and he was missing a valve. During the nine-hour surgery on July 28 Hanley repaired the hole and wove together pieces of Matthew's smaller arteries to create a pulmonary artery. He also created a valve using cadaver tissue. During their time at Stanford, the Kings were surrounded by other families dealing with sick babies, something they said was helpful in some ways, scary in others.

"It was helpful but there were also babies that were dying around us. It was pretty awful," Mike King, Matthew's father, said. "It was something surreal, like out of a movie. It was like 'Schindler's List' where the person next to you gets taken to the gas chamber but you live."

Even when Matthew was doing well overall there was always concerns about things like staph infection, which he had at one piont, and other risks.

"It was an unbelievable pressure cooker. You're just wondering what's coming next," Mike said.

They were under too much stress to think much about any of their Las Vegas life.

"This last six months have been like the 'Twilight Zone,' " Terri said. "It's like our whole life was in the hospital while everything went on around us."

Terri quit her job some time ago and was planning to stay home with Matthew full time and Mike is a detective with the Metropolitan Police Department. He said the department was wonderful about letting him take the time off he needed to help Matthew.

But the financial strain on the family was significant. Although fully insured they reached the lifetime spending cap early on. Luckily they have been able to find other temporary insurance resources but there are still co-payments to worry about, not to mention the issue of future medical bills when the temporary resources run out.

Watching their little child go through the countless grueling tests and the effects of his illnesses was extremely difficult. There were times when Matthew was extremely dehydrated. Because of the misdirected arteries around his heart, at one point blood was pouring into his lungs on a regular basis. Doctors gave him diuretics in order to get rid of some of the extra fluid but sometimes he got rid of too much.

"They had him so dry he looked like a little Kenyan marathon runner," Mike said.

Terri had a hard time watching the needles being poked into her son over and over again.

"They would spend whole afternoons trying to get lines in him and it was really horrible," she said. "We've got picture of him where both his arms are black and blue, his legs are black and blue, his feet were black and blue."

Doctors are not making any promises about Matthew's future life. The surgery is so new that no one really knows exactly what will happen.

"As recently as the '80s, before Dr. Hanley developed this surgery, there was no treatment," Mike said. "You took your child home and you enjoyed him for as long as you could."

At this point doctors think Matthew can lead a normal life except for the valve changes. Because the valve was created with cadaver tissue it will not grow with him. The valve will have to be replaced periodically as he grows and every five years as an adult. Doctors recently said he would need a new valve in May or June of 2006, which means another open heart surgery.

Matthew also has tracheal/bronchial malasia or "floppy airways" so his lungs also will need special treatment for the next few years. The Kings have to give him special breathing treatments and he is on oxygen most of the time.

Also part of their daily routine is a cabinet full of medicines and ounces and ounces of frozen breast milk which Matthew can only take in through a feeding tube.

The Kings are hopeful but cautious.

"Other than the valve changes he should have a very normal life," Mike said. "He's probably not going to be Lance Armstrong but he should be able to play sports like the other kids."

If will has anything to do with it, he should be around for a long time. Matthew has been through more medical procedures more than many do in their entire lives and he is still growing and smiling.

"Life finds a way," Mike said.

According to the American Heart Association, congenital heart defects are the most common birth defect and are the No. 1 cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined.