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Couple grapples with son's heart defect
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by diane vance/gate city staff writer
Pregnancy brings many changes to families in the form of a mixture of dreams, fears, responsibilities, joy and pain.
For former Keokuk resident Jim Babka and his fiancé Beth, now living near Cedar Rapids, all of that proved true with the birth of their son, Aiden Babka, on Jan. 13.
Beth, who has a 6-year-old daughter, says doctors were concerned in her first pregnancy that the baby was small. In this second pregnancy, she had an ultrasound at five months when doctors were again concerned about the baby's size.
"That's when we started to learn about hypoplastic left heart syndrome," said Jim, who has two children from a previous marriage.
The congenital heart defect doesn't affect the baby until birth, said Beth. The couple was given a few options - an abortion, heart surgery after the baby is born, or do nothing - just let the baby be born and live a few days or weeks.
The parents opted for the surgery, which is actually at least three heart surgeries - one in the first week of life, a second when the child is about six months and the third when the child is 3 years old or weighs 33 pounds.
Hypoplastic left heart syndrome occurs in one of 5,000 births, but has only been diagnosed, understood and treated in the past 20 to 22 years, said Jim. He has educated himself through the Internet and numerous doctor visits and hospital stays.
The left side of the heart, including the aorta, mitral valve and the left ventricle, is underdeveloped, which can be detected with ultrasound images. In a normal heart, red blood returning from the lungs flows from the heart's upper left chamber through the mitral valve to the left ventricle, where it is pumped through the aortic valve and out to the body.
Babies with hypoplastic left heart syndrome cannot pump enough blood to meet their body's needs. Without treatment, 95 percent die in the first month of life. Treatment is by three heart surgeries that re-route the blood through grafted arteries or a heart transplant. The children require expert medical care for the rest of their lives.
"The deaths are often blamed on Sudden Infant Death Syndrome," said Jim. "Before birth, babies get oxygen from their mother. Blood is pumped from the right side of the heart and bypasses the lungs by flowing through a blood vessel, which closes down a day or two after birth. Aiden was given medicine to keep that vessel open until his first surgery.
"If we didn't get the ultrasound, we never would have known about this condition and our son would have died within a few weeks after birth. All pregnant women should have an ultrasound. But not all medical insurance will cover the cost," he said.
Once the parents did learn about the defect, they traveled to weekly doctor appointments at the University of Iowa Hospital and Clinics. After an induced birth, Aiden was scheduled for surgery but was bumped by a more serious case. A baby girl had the same heart defect and was given priority.
"We never left the hospital," said Beth. "Jim and I lived in the Ronald McDonald House and sometimes slept in the hospital. Aiden had his surgery at 11 days old. He was fed through the nose. He didn't start learning to eat until he was five weeks old."
The parents say it has been an exhausting and financially depleting experience. They have had to juggle childcare, jobs and responsibilities.
Jim talked to his son, 10, and daughter, 7, about Aiden before he was born.
"They live with their mom, so I haven't had to move them around a lot," he said.
Beth's daughter does live with them near Cedar Rapids. Grandparents and family members have stepped in to help as needed.
"It's been hard to go back and forth," said Pam Olson of Keokuk, Jim's mother. "And it's hard to have Aiden, Jim and Beth go through all this."
The first heart surgery in January was 12 hours long, cost $380,000 and the four-inch surgical opening on Aiden's chest had to be left open for seven days due to fluid build-up. He takes six or seven different medications daily.
"He had the second surgery three weeks ago and he started having seizures afterward," said Jim. "I bugged the doctors about it and finally got a head CT scan. Aiden had suffered a massive stroke in the first surgery. Parts of his brain have died."
The stroke has curtailed voluntary movements on Aiden's right side. He has begun physical therapy at St. Luke's in Cedar Rapids.
"We pray a lot," said Jim. "I've learned more about veins and the heart than I ever wanted to."
He is currently out of work and staying home with Aiden while Beth takes classes for a nursing career.
"I like being able to stay home with my kids," said Beth. "But we spent so much time in the hospital. I feel I can be compassionate and helpful to sick and hurting people."
Jim, who served in the Army, is a member of the Iowa National Guard, 2168 Transportation Company stationed at the Cedar Rapids airport. There is a possibility the unit could be mobilized for overseas duty.
"I was missing so much work in the beginning and Beth had her own business, we decided I should stay home and be the care taker," he said. "Aiden can't go to daycare because his immune system isn't strong enough to fight infections. Now Beth has lost her business, and I've had to miss Guard drill dates. But the Army has been great about it. I'm up for re-enlistment in December. I'm really tempted by the money. But I don't want to be activated and have to leave my family. Beth and Aiden need me here. My dad, Dave Olson, has been great. He's loaned us money. He works at Metzeler in Keokuk. The employees there took up a collection for us and donated money to us."
Jim says he hates to ask for money.
"Everyone at the hospital except us has had a benefit," he said. "But we don't live in a small town."
Jim does have a local bank account at State Central Bank. Anyone in the community is welcome to donate toward Aiden's medical expenses.
The couple is hoping for a stretch of uneventful life and watching their new son grow. Aiden will have a third surgery when he weighs 33 pounds, which Beth thinks will be when he is 3 years or older because of his small size.
For former Keokuk resident Jim Babka and his fiancé Beth, now living near Cedar Rapids, all of that proved true with the birth of their son, Aiden Babka, on Jan. 13.
Beth, who has a 6-year-old daughter, says doctors were concerned in her first pregnancy that the baby was small. In this second pregnancy, she had an ultrasound at five months when doctors were again concerned about the baby's size.
"That's when we started to learn about hypoplastic left heart syndrome," said Jim, who has two children from a previous marriage.
The congenital heart defect doesn't affect the baby until birth, said Beth. The couple was given a few options - an abortion, heart surgery after the baby is born, or do nothing - just let the baby be born and live a few days or weeks.
The parents opted for the surgery, which is actually at least three heart surgeries - one in the first week of life, a second when the child is about six months and the third when the child is 3 years old or weighs 33 pounds.
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The left side of the heart, including the aorta, mitral valve and the left ventricle, is underdeveloped, which can be detected with ultrasound images. In a normal heart, red blood returning from the lungs flows from the heart's upper left chamber through the mitral valve to the left ventricle, where it is pumped through the aortic valve and out to the body.
Babies with hypoplastic left heart syndrome cannot pump enough blood to meet their body's needs. Without treatment, 95 percent die in the first month of life. Treatment is by three heart surgeries that re-route the blood through grafted arteries or a heart transplant. The children require expert medical care for the rest of their lives.
"The deaths are often blamed on Sudden Infant Death Syndrome," said Jim. "Before birth, babies get oxygen from their mother. Blood is pumped from the right side of the heart and bypasses the lungs by flowing through a blood vessel, which closes down a day or two after birth. Aiden was given medicine to keep that vessel open until his first surgery.
"If we didn't get the ultrasound, we never would have known about this condition and our son would have died within a few weeks after birth. All pregnant women should have an ultrasound. But not all medical insurance will cover the cost," he said.
Once the parents did learn about the defect, they traveled to weekly doctor appointments at the University of Iowa Hospital and Clinics. After an induced birth, Aiden was scheduled for surgery but was bumped by a more serious case. A baby girl had the same heart defect and was given priority.
"We never left the hospital," said Beth. "Jim and I lived in the Ronald McDonald House and sometimes slept in the hospital. Aiden had his surgery at 11 days old. He was fed through the nose. He didn't start learning to eat until he was five weeks old."
The parents say it has been an exhausting and financially depleting experience. They have had to juggle childcare, jobs and responsibilities.
Jim talked to his son, 10, and daughter, 7, about Aiden before he was born.
"They live with their mom, so I haven't had to move them around a lot," he said.
Beth's daughter does live with them near Cedar Rapids. Grandparents and family members have stepped in to help as needed.
"It's been hard to go back and forth," said Pam Olson of Keokuk, Jim's mother. "And it's hard to have Aiden, Jim and Beth go through all this."
The first heart surgery in January was 12 hours long, cost $380,000 and the four-inch surgical opening on Aiden's chest had to be left open for seven days due to fluid build-up. He takes six or seven different medications daily.
"He had the second surgery three weeks ago and he started having seizures afterward," said Jim. "I bugged the doctors about it and finally got a head CT scan. Aiden had suffered a massive stroke in the first surgery. Parts of his brain have died."
The stroke has curtailed voluntary movements on Aiden's right side. He has begun physical therapy at St. Luke's in Cedar Rapids.
"We pray a lot," said Jim. "I've learned more about veins and the heart than I ever wanted to."
He is currently out of work and staying home with Aiden while Beth takes classes for a nursing career.
"I like being able to stay home with my kids," said Beth. "But we spent so much time in the hospital. I feel I can be compassionate and helpful to sick and hurting people."
Jim, who served in the Army, is a member of the Iowa National Guard, 2168 Transportation Company stationed at the Cedar Rapids airport. There is a possibility the unit could be mobilized for overseas duty.
"I was missing so much work in the beginning and Beth had her own business, we decided I should stay home and be the care taker," he said. "Aiden can't go to daycare because his immune system isn't strong enough to fight infections. Now Beth has lost her business, and I've had to miss Guard drill dates. But the Army has been great about it. I'm up for re-enlistment in December. I'm really tempted by the money. But I don't want to be activated and have to leave my family. Beth and Aiden need me here. My dad, Dave Olson, has been great. He's loaned us money. He works at Metzeler in Keokuk. The employees there took up a collection for us and donated money to us."
Jim says he hates to ask for money.
"Everyone at the hospital except us has had a benefit," he said. "But we don't live in a small town."
Jim does have a local bank account at State Central Bank. Anyone in the community is welcome to donate toward Aiden's medical expenses.
The couple is hoping for a stretch of uneventful life and watching their new son grow. Aiden will have a third surgery when he weighs 33 pounds, which Beth thinks will be when he is 3 years or older because of his small size.
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