Hope for babies with heart defects

2004-02-09
by Linda Braden Albert
of The Daily Times Staff

Jonét Howard loves her daddy.

The wide, toothless grins cast by the 9-month-old charmer toward Johnny Howard and her attempts to engage him in a ``raspberry'' contest made the fact obvious that she's definitely daddy's little girl.

``She is such a blessing,'' said Howard with a smile, a big man just as smitten with the brown-eyed little girl as she is with him.

Just a few short months ago, Johnny and Amy Howard would not have been able to play with their daughter as they had on this day recently at their Maryville home. The slightest effort, even drinking a few ounces of formula, tired Jonét to the point that she slept constantly.

``It took her 45 minutes to take two ounces,'' Amy recalled. ``She was just worn out. She slept 20 hours a day.''

Jonét was born May 5, 2003 with ventricular septal defect, or VSD, a type of heart defect in which there is a hole in the wall, or septum, between the lower chambers of the heart. Amy Howard explained that most of Jonét blood was being pumped from one side of the heart to the other rather than circulating throughout her body.

Successful surgery:

Surgery to repair the hole in the baby's heart was done Sept. 11 at Vanderbilt University Medical Center.

The difference in Jonét was almost immediate.

``Going into the surgery, she was weighing about 10 pounds, 8 ounces,'' Johnny said. ``Soon after the surgery she started picking up weight rapidly.''

Amy said another big difference was in the baby's activity. Not only did she play and stay alert, but she began to reach milestones common to children her age, such as rolling over, holding toys and shaking them. She was also interacting more with the other men of the house, her brother, 5-year-old Colby, and cousin, 7-year-old Tristan.

``After the surgery, she was just so alert and so awake,'' Amy said. ``She can actually play with you rather than just look at you and close her eyes. But the growth is the main thing. She's still small but catching up.''

Jonét no longer has to take heart medication but must take shots to build her immune system. Even a minor cold in a healthy infant could be devastating for Jonét, so her family is very protective of her. The shots will end in April, Amy said.

The baby still has a slight heart murmur but ``it's nothing she can't live with,'' her proud daddy said. ``I thought I was tough, but I'm nowhere near as tough as she is.''

The Howards want other parents in the same situation to know that there is hope when a child is born with a serious heart defect.

``Don't give up,'' Johnny said. ``Don't let anybody tell you that you can't get through it.''

Support makes the difference:

The Howards are very appreciative for all the financial and emotional support they received from churches, individuals and Saving Little Hearts, a support group for parents of children with heart defects.

Like the Howards, the diagnosis of a heart defect in a child leaves the families shocked, scared, confused and unsure of how to proceed. Saving Little Hearts was formed by Karin and Brad Coulter after they went through this same experience with their son, Ben, now a healthy, happy 2-year-old. His surgery was done when he was almost 4 months old, in May 2002.

Saving Little Hearts is dedicated to helping children with congenital heart defects and their families in Tennessee and the surrounding areas by providing financial and emotional assistance and educational information.

``That's the great thing about Saving Little Hearts,'' Amy Howard said. ``They gave us information and a book on congenital heart defects. It's difficult to find information on heart trouble in children.''

One of the services offered by Saving Little Hearts is a care package waiting at the hospital for families of children having heart surgery with snacks and activities to pass the time while surgery is being performed.

The support group also strives to provide enriching, educational and fun experiences for the children to help them build friendships and confidence.

Congenital Heart Defect Awareness Day will be observed Feb. 14 to increase public awareness of congenital heart defects and childhood heart disease.

For more information:

Saving Little Hearts is a discussion-based support group offering an open forum for families dealing with the hardships of raising children with congenital heart defects. The group meets from 6-8 p.m. the first Tuesday of each month in the Baptist Eye Institute, William Bailey Conference Room. For more information call 748-4605 or visit www.savinglittlehearts.com. Congenital Heart Defect Awareness Day will be held Feb. 14. For information visit the Web site at www.tchin.org.

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