Med­i­cal pro­ce­dure gives baby a chance

The News Herald (Willoughby, OH) - - Front Page - By Jean Bon­chak

Twenty years ago, baby Lorenzo’s mul­ti­ple heart de­fects likely would have cut short his young life.

So say doc­tors who per­formed an in­no­va­tive and un­com­mon surgery on now 8-months-old Lorenzo while he was still be­ing car­ried in his mother’s womb.

After an exam dur­ing Heather Catanese’s 22nd week of preg­nancy, she learned that the left side of the child’s heart was not func­tion­ing prop­erly. The di­ag­no­sis was three­fold: se­vere aor­tic steno­sis, se­vere mi­tral re­gur­gi­ta­tion and evolv­ing hy­poplas­tic left heart syn­drome.

“Ba­bies born with HLHS are some­times re­ferred to as hav­ing half a heart, be­cause the left cham­bers of the heart are too small to pump blood to the body,” ac­cord­ing to in­for­ma­tion from UH Rain­bow Ba­bies & Chil­dren’s Hos­pi­tal. “Not only did this fe­tus have de­vel­op­ing HLHS, but he also had se­vere leak­age of an­other heart valve.

“Sta­tis­tics show that ba­bies with this com­bi­na­tion of de­fects have a 10 per­cent chance of sur­vival to 6 months of age.”

Once the un­for­tu­nate news was given, Heather said that she and her hus­band An­thony, who live in Chardon, had few ex­pec­ta­tions for a full-term, healthy baby.

“It didn’t seem like there would be a vi­able out­come. It was very dif­fi­cult to go over the what-ifs,” she re­called.

Dr. James Strainic, direc­tor of the Fe­tal Heart Pro­gram at UH Hos­pi­tals Rain­bow Ba­bies & Chil­dren’s Hos­pi­tal, ex­plained to them that Lorenzo’s con­di­tion was “one of the worst pos­si­ble com­bi­na­tion of prob­lems - the block­age of one valve and the se­vere leak­age of an­other,” the Catane­ses were given a glim­mer of hope.

Doc­tors in­formed the cou­ple of a con­gen­i­tal Heart Col­lab­o­ra­tive com­prised of a part­ner­ship be­tween Rain­bow and the Na­tion­wide Chil­dren’s Hos­pi­tal in Colum­bus which is able to per­form a unique in-utero pro­ce­dure named Fe­tal Aor­tic Valvu­lo­plasty that could pos­si­bly im­prove their un­born son’s con­di­tion.

How­ever, first it was nec­es­sary to de­ter­mine if Lorenzo was a pos­si­ble can­di­date. Next, the Catane­ses needed to de­cide if they were will­ing to take the risk as the rarely per­formed op­er­a­tion did not en­sure suc­cess.

Armed with in­for­ma­tion that their son was suitable for the pro­ce­dure as well as ex­ten­sive knowl­edge gleaned though re­search done by the cou­ple, they chose to move ahead in hopes that the Aor­tic Valvu­lo­plasty would help to bring about his live birth.

Op­ti­mally, the min­i­mally in­va­sive fe­tal pro­ce­dure is to at­tempt to re­verse the de­vel­op­ing HLHS and de­crease the num­ber of open heart surg­eries for the child later in life, ac­cord­ing to Dr. Aimee K. Arm­strong, direc­tor of Car­diac Ca­theter­i­za­tion and In­ter­ven­tional Ther­a­pies at Na­tion­wide.

How­ever, the Catanese fam­ily was only hop­ing “to give him a chance at life. To meet him, to hold him, to meet his brothers,” An­thony said.

Any ad­di­tional pos­i­tive out­come would be a pre­cious bonus.

The pro­ce­dure proved to be a suc­cess and weekly ul­tra­sounds re­vealed con­tin­u­ous im­prove­ment through­out the re­main­der of Heather’s preg­nancy.

On May 18, Lorenzo was born and placed in his mother’s wait­ing arms.

“That was a big win for us…the fact that they let me hold him,” Heather said. “He was do­ing so well. These were all happy mo­ments.”

The only other surgery Lorenzo has needed thus far was a bal­loon pro­ce­dure per­formed when he was 3 weeks old and he also re­sponded well to that. He con­tin­ues to be tested reg­u­larly and no other prob­lems have arisen.

The ac­tive, nor­mally de­vel­op­ing in­fant sits, crawls and loves watch­ing his brothers Gianni, 6 and Luca, 5, at play.

“He will turn his body and flip around to be with his brothers. He wants to be right in the mix,” Heather said.

Be­cause the fe­tal pro­ce­dure is tech­ni­cally ex­per­i­men­tal, in­sur­ance does not cover its cost. Even­tu­ally, with more cases be­ing com­pleted, the Catane­ses hope that cov­er­age will be ap­proved.

In the mean­time, they have ini­ti­ated a Benev­o­lent Fund, The Fe­tal Heart Foun­da­tion, to raise money for the Con­gen­i­tal Heart Col­lab­o­ra­tive at UH Rain­bow Ba­bies & Chil­dren’s Hos­pi­tal.

The first event is sched­uled for July 27 at the Cleve­land Mu­seum of Nat­u­ral His­tory.

At this point in time grat­i­tude ranks high on their pri­or­ity list.

“I am so thank­ful that we’re here in this city with this amaz­ing health care, to be at the hos­pi­tal with the team,” Heather said. “Not even a lot of doc­tors know about this pro­ce­dure.” An­thony agrees. “I feel so blessed and for­tu­nate that peo­ple are do­ing this pro­ce­dure and giv­ing ba­bies like Lorenzo a chance at life,” he said.

SUB­MIT­TED

Pic­tured are Heather and An­thony Catanese with in­fant son Lorenzo. The child un­der­went a rare pro­ce­dure to cor­rect se­ri­ous heart de­fects while in-utero.

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