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Building on success
New MAUDE Unit to handle 'graduates' from The Children's and beyond

Drs Beland & Marelli
Two ends of a cardiac continuum: Dr. Marie Béland (left), head of Pediatric Cardiology at The Children's, and Dr. Ariane Marelli, director of the McGill Adult Unit for Congenital Heart Disease, care for infants and adults with congenital heart disease.

This is a success story built on strong foundations. It starts with Dr. Maude Abbott, a Quebecer who pioneered the study of congenital heart disease, and continues with the international recognition received by the pediatric heart surgery program at the Montreal Children's Hospital of the McGill University Health Centre. Most of all, it's the story of patients born with congenital heart disease who, in years past, might never have seen graduation day.

But with success comes growth and transition. The first generation of newborns treated for congenital heart disease at The Children's is now graduating into the adult world. The new transition initiative, the McGill Adult Unit for Congenital Heart Disease or the MAUDE Unit, will ensure that patients with congenital heart disease who graduate from The Children's are followed closely and receive care as adults.

"Those patients are at The Children's because of the expertise that exists in surgery that was established by Dr. Anthony Dobell, that was continued by Dr. Tchervenkov, and that was promoted and fostered in partnership with pediatric cardiologists, now headed by Dr. Béland," says Dr. Ariane Marelli, director of the MAUDE Unit.

The unit's name has historical significance to both the MUHC and the medical community. Dr. Christo I. Tchervenkov, director of the McGill Centre of Excellence for Congenital Heart Disorders, says, "Dr. Marelli creatively thought of some way of honouring Maude Abbott."

The MAUDE Unit will be set up on the 11th floor the Montreal General Hospital and will provide adult patients with congenital heart disease the continual surveillance they require. "On average they have two to three operations in their life and so they have various issues that are important in follow-up," says Marelli. The risk of arrhythmia or heart failure is high, and special attention must be paid to pregnancy, genetic counseling, and problems related to the lungs and kidneys. For this reason says Marelli, "It's really a multi-disciplinary team that we need to look after these patients properly."

Tchervenkov agrees. "All these patients need prime time follow-up.... There are a lot of other things to sort out and a small number of those patients may eventually need heart transplantation or a heart-lung transplantation."

The MAUDE Unit falls under the umbrella of The McGill Centre of Excellence for Congenital Heart Disorders, which manages patients of all ages. Children born with congenital heart disease will now be able to move seamlessly through the MUHC in what Dr. Jacques Genest, MUHC Director of Cardiology, describes as, "The continuum of care from the fetus to the adult patient."

Dr. Marie Béland, the division head of Pediatric Cardiology at The Children's, lies at one end of that continuum. "We diagnose and take care of fetuses with heart problems and counsel parents alongside with our obstetrical colleagues," she says. After birth, Béland and her colleagues continue to diagnose and manage children's cardiac problems, but they cannot follow the children once they reach age 18.

Straddling both sides of patient care is Tchervenkov, who Béland says, "pioneered infant heart surgery" in Canada. Marelli, at the other end of the continuum, currently cares for about 400 adults with congenital heart problems and expects to see that figure increase by 70 or 80 patients annually, because of the quality of care they receive at The Children's.

Marelli adds, "That is what is so wonderful for the patient, often it's Dr. Tchervenkov who's operated on them when they were very little, it's Dr. Béland who's looking after them ... It's really one deciding body for all of congenital heart disease at McGill and this is the advantage of The McGill Centre of Excellence for Congenital Heart Disorders.

"This is a unique concept in Quebec; an outstanding model for patients with congenital heart disease. With the Glen yards in sight, we will have an enviable ability to deliver integrated tertiary care. Our reach will be great."

One of these patients is Darren Prentice, 35, president of Carlisle Consulting and A/C Construction. He was diagnosed with congenital heart disease at The Children's after his mother brought him to Montreal from the Gaspé. Many years later, Marelli now monitors Prentice's condition.

Many people don't realize heart problems affect the young. Prentice recalls the first time he went to an adult cardiology clinic. "I remember some of the adults saying, 'what are you doing here? You're a baby.'" He explained that he'd already had three open-heart surgeries. "I've been around the block," he told them.

"I think that having heart trouble is probably the best gift that I've ever been given from God," he says. "It's given me a greater appreciation of life. It's certainly opened up my eyes to the world and made me appreciate every breath. The people that have cared for me throughout the past have been above and beyond their call of duty in the sense of friendship, in the sense of tenderness, sincerity. They've been role models, I suppose, in my life."

Not content with being a patient, Prentice worked his way through school on the housekeeping staff at The Children's. He volunteered and saw many of the children with congenital heart defects who had taken his place, and talked to the kids and their parents. "Especially the parents, they really appreciated my talking with them," he says. "I've had surgery, I'm a direct result of the hospital here...and I'm healthy. It's just believing that the system does work, that you're in good hands, that their children will be all right."

Some of the funding for the MAUDE Unit has come from private donations that have offset the cost of renovating the space on the 11th floor the MGH and hiring personnel. Dr. Menard Gertler, a well-known cardiologist and graduate of McGill University, and President of the Julia and Seymour Gross Foundation, made a contribution that permitted the construction of the physical facilities. The unit has also received grant money for research.

Once MAUDE is fully functioning, Marelli will no longer be the only specialist caring for adults with congenital heart disease. The unit will have three physicians and five support staff. "We want to have a core multi-disciplinary team. In addition, within the various areas of medicine, we want to identify specific people to work with," says Marelli.

Marelli sums it all up. "You cannot do this in isolation. No matter how much of a specialist you are...it requires a concerted effort, a partnership with a congenital heart surgeon who's very good, a strong pediatric cardiology department and a supportive institution."

At the end of the day, it's all one big team working for Darren Prentice and others like him. Working to put a happy ending to every story.

source: MUHC ensemble

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