Baby’s heart condition challenges mom & dad
BY CLARE MARIE CELANO
Staff Writer

FREEHOLD TOWNSHIP — Matthew Lubach does pretty much what other 14-month-olds do, but when his mom kisses him good-night, he always gets an extra kiss — just because you never know.

Matthew was diagnosed with tetralogy of Fallot — a congenital condition of the heart — while he was still in utero. To date, because of his condition, the little trouper has pulled through two major surgeries.

His birth, which took place at the University of Pennsylvania Hospital, Philadelphia, according to his mom, Sandy, was “beautiful” and did not require immediate open heart surgery as it so often does.

Nonetheless, Matthew was taken into surgery at Children’s Hospital of Phila-delphia (CHOPS), where he had been taken immediately after birth for monitoring because his esophagus was not attached to his stomach. That disorder, called tracheoesophageal fistula, did not allow him to retain any nourishment.

He came through that surgery and had a “full repair,” according to Lubach, who said that after delivering Matthew, the baby was “swooped” out of her arms and on his way to CHOPS.

“I got to touch his toe,” she said, remembering.

Lubach said tetralogy of Fallot rarely comes by itself. It usually brings other disorders along with it, such as club feet, cleft palate or a chromosome that causes mild to moderate retardation.

At 2 months old, Matthew was readmitted to CHOPS for open heart surgery to repair the congenital heart defects. According to his mom, there are four defects in tetralogy of Fallot, which ultimately decreases the flow of blood to the lungs and mixes blood from both sides of the heart. Sandy said in this condition, the “good” blood or oxygenated blood, mixes with he “bad” blood, deoxygenated blood, and then flows through the baby’s body.

Although Lubach was monitored throughout her pregnancy, once she was diagnosed, she said the doctors would not know the severity of the condition until the birth of the baby. She and her husband, Ted, and their daughter, Kayla, 7, are very grateful that Matthew did not have to have heart surgery immediately after his birth.

Matthew is doing well right now, according to Lubach, who said that if someone saw him running and playing, they would never know there was anything wrong, unless they saw the scar on his chest.

Matthew will need to have angioplasty to open up a pulmonary artery that is too small to allow blood to flow to his left lung, a condition called pulmonary stenosis.

Listening to Lubach, 40, talk about her son, one could feel the courage and stamina of a person who has learned to take things one day at a time. The strength and purpose could not disguise the tender emotions of love and fear that lie underneath the bravery.

“We’re so grateful Matthew is here with us. He brings so much joy to all of us,” Lubach said, exhibiting a positive and upbeat attitude toward the road ahead, which she admits will be long and difficult.

She said that for those times when she gets a bit low, she remembers other children — youngsters she sees every few months when she takes her little boy to CHOPS.

“Spend two hours in that lobby and you can’t help but kiss the ground when you come out again,” she said sadly.

Lubach and her husband have been navigating the landscape of tending to a sick child with a great deal of support from family and friends, but she says there is someone else she needs support from right now — parents who deal with the effects of congenital heart disease every day.

“Our friends and our families have all been so supportive, but unless you have had the experience of having your baby taken out of your arms on a regular basis you just don’t know,” she said. “You just can’t know.”

Matthew’s mom said a support group would give parents the opportunity to be strong for each other and help each other get through the bad times and enjoy the good times as well. In her own words, Lubach said she wanted to get her name “out there so that others don’t have to suffer, celebrate and go this long, hard journey alone.”

Sandy said she and Ted try to keep thing as normal as possible in between hospital and doctor visits. The couple concentrate on normal parenting, and enjoy watching Matthew be a toddler, as he reads his books and plays with his toys.

“Life is so precious now,” she said. “Every day is a blessing, although every time my husband and I take him to the hospital, I always fear we’ll hear something we don’t want to hear. I love him so much. All I want is for him to have a long and happy life. And, when I tuck him in at night, I always give him an extra kiss and,” she added quietly, “I hope that morning will come for him.”

Lubach may be contacted by e-mail at slubach@optonline.net.