Help­ing Heal Lit­tle Hearts and big ones, too!

Wellness Update - - Healthwatchmd -

Amer­i­can Heart As­so­ci­a­tion of­fers tools and re­sources for fam­i­lies of chil­dren with con­gen­i­tal heart de­fects

Wait­ing on the ar­rival of your bun­dle of joy is an ex­cit­ing time and, as days tick by, the prospect of a healthy bounc­ing baby be­comes a re­al­ity. Yet most fam­i­lies don’t know the risks of con­gen­i­tal heart de­fects (CHD), what they are and how they are treated un­til they are di­ag­nosed just be­fore, or af­ter, the baby is born. That’s why the Amer­i­can Heart As­so­ci­a­tion is work­ing to ed­u­cate par­ents and their loved ones dur­ing preg­nancy on things they should know.

“Be­fore Blake was born, I wish I had known how com­mon CHDs are in chil­dren and that, as a mother there was noth­ing that I did to cause his con­di­tion,” com­mented Tif­fany Galligan, mom and care­giver to Blake, 4. “It would have been great to know that they are treat­able and, if de­tected early, chil­dren can live full, happy lives.”

In fact, about 32,000 in­fants are di­ag­nosed with a con­gen­i­tal heart de­fect each year and 1.3 mil­lion

Amer­i­cans are liv­ing to­day with a CHD.

Blake was di­ag­nosed with Hy­poplas­tic Left Heart Syn­drome, or HLHS. He had his first open-heart surgery at seven days old, the sec­ond at five months old and his third when he was three years- old. “No one in our fam­ily had a sim­i­lar con­di­tion – this was new to us,” Tif­fany con­tin­ued. “We were in shock and dis­be­lief when he was di­ag­nosed at a day old and felt like our world was crash­ing down around us.”

Par­ents need cred­i­ble in­for­ma­tion and peer sup­port dur­ing this time. In an ef­fort to help pro­vide fam­i­lies the tools and in­for­ma­tion par­ents need to help pre­pare them, or of­fer sup­port and in­for­ma­tion dur­ing di­ag­no­sis and treat­ment, the Amer­i­can Heart As­so­ci­a­tion has a web por­tal that breaks down the mean­ing of a CHD, most com­mon types of CHDs, treat­ment, and what care­givers can do when their lit­tle one is di­ag­nosed with a CHD and per­sonal sto­ries that help of­fer sup­port and mo­ti­va­tion.

“The di­ag­no­sis of a con­gen­i­tal heart de­fect can be dev­as­tat­ing and fright­en­ing for par­ents. Med­i­cal care teams are able to ed­u­cate fam­i­lies about con­gen­i­tal heart disease, whether the di­ag­no­sis is made pre­na­tally

or af­ter birth. With the knowl­edge and sup­port given by health care providers, par­ents as well as ex­tended fam­i­lies are bet­ter equipped to tackle the med­i­cal and sur­gi­cal treat­ment, which may be dif­fi­cult, as they help their child along the road to re­cov­ery.” Com­mented Cather­ine L. Webb, M.D., M.S, Pe­di­atric Car­di­ol­o­gist, Pro­fes­sor of Pe­di­atrics and Com­mu­ni­ca­ble Dis­eases at the Univer­sity of Michi­gan Med­i­cal School and spokesper­son for the Amer­i­can Heart As­so­ci­a­tion. “I of­ten find my­self re­as­sur­ing par­ents that there is noth­ing they could have done to pre­vent their child's con­gen­i­tal heart de­fect. It’s not any­one's fault. Although con­gen­i­tal heart disease is the lead­ing cause of death in chil­dren with birth de­fects, the prog­no­sis is quite hope­ful, as there are more than 1.3 mil­lion Amer­i­cans liv­ing to­day with some form of a con­gen­i­tal heart de­fect. Par­ents should also know that the Amer­i­can Heart As­so­ci­a­tion’s tools and re­sources are fo­cused on prevent­ing as well as im­prov­ing di­ag­no­sis and out­comes in con­gen­i­tal heart disease. The prog­no­sis for pa­tients with CHD is far su­pe­rior to­day com­pared to even 10 years ago. Re­search sup­ported by or­ga­ni­za­tions, such as the AHA, will con­tinue to im­prove out­comes and qual­ity of life for pa­tients with con­gen­i­tal heart disease.” As for Blake – what’s his prog­no­sis? “He is liv­ing life as a nor­mal kid. He plays soc­cer, swims, goes to gymnastics and at­tends preschool. We don’t know what the fu­ture has in store for our lit­tle guy. He may need more surg­eries later down the road, or even a trans­plant, but we are en­joy­ing ev­ery day, ev­ery smile and ev­ery ac­com­plish­ment,” Tif­fany con­cluded. “I just hope the par­ents of kids with CHDs take care of them­selves so they can take care of their lit­tle ones.” For more in­for­ma­tion on con­gen­i­tal heart de­fects and sup­port for care­givers visit www. heart.org/con­gen­i­tal­heart­de­fects and www. heart.org/care­givers. -This in­for­ma­tion pro­vided courtesy of the Amer­i­can Heart As­so­ci­a­tion

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