From One Heart to AnotherBy: Kaylyn Hlavaty
Big Hearts Helping Children with Theirs
Text by: Kaylyn Hlavaty
“She was tired, and very skinny and didn't have much effort like a normal child. Of course we knew about her disease, you can assume that we were very worried and scared, both in the sense of our child's well-being and what the financial costs would be to ensure a healthy life for our girl.” says Mazen, a father of Lama, who was only 3 years old when she underwent her first surgery. In July 2014, Lama underwent a surgical repair, which was the second treatment funded by the Brave Heart Fund.
With the help of the Brave Heart Fund—, one of Lebanon's only non-profit organizations dedicated to providing adequate funding to families with a child born with congenital heart disease and the multi-disciplinary team at the Children's Heart Center (CHD)at the American University of Beirut Medical Center (AUBMC), children born with a form of this disease have a chance to live a normal life. Started in November 2003, the Brave Heart Fund started as a charitable, grassroots initiative created by parents who had children suffering from the disease. Co-founder of the Brave Heart Fund, Joumana Ghandour Atallah, says over the years, since the organization started, they have funded over 2,500 surgeries.
“There is no gray zone when it comes to the heart, if the child doesn't get the needed treatment, such as a surgery, we might lose the child. That is what is so immediate about congenital heart disease for children, we are talking about a vital organ in the body that requires immediate attention,” Atallah says.
Worldwide, for every 100 babies born, one will be born with a form of congenital heart disease. In Lebanon alone, there are more than 600 babies born with the disease, about 400 of whom will require some form of surgery either early on or later on in childhood according to the Children's Heart Center at the American University of Beirut Medical Center.
Director of the Children's Heart Center at AUBMC, Dr. Fadi Bitar says congenital heart disease (CHD) is the most common congenital anomaly and is the leading cause of death in the first year of life. There are more than 35 types of CHD. The disease is an abnormality in the heart that can include anything from the most common heart defect, ventricular spetal defect (VSD )–, known as a “hole” in the heart, to hyrdroplastic, where the heart is underdeveloped. The latter, condition often requires the patient to have heart transplant or multiple surgeries performed within the first couple years of birth.
“Frequencies of congenital heart disease are usually uniform throughout the world. In Lebanon, the most common form is VSD which is about the same as it is in the United States,” says Bitar.
As the case is with many diseases, early detection of congenital heart disease can lead to a better outcome for the baby and allows doctors to provide efficient and accurate treatment for the baby while
also educating the parents, says Bitar.
“If the fetus has a heart problem, then we educate the mom and dad and we deliver the baby at the tertiary center which is equipped to treat that baby when it is born,” Bitar says.
Early detection does not change lack of ability to pay for treatment though. Parents who have a child with congenital heart disease find it hard to digest the news while stressing about how to pay for the surgery. In the case of Mazen, it was too much to bear.
“When we heard about the surgery, we felt fear of course, my heart was between my hands. She was only three years old. Thank God, the whole team of AUB, I will never thank them enough they helped us so much, they were amazing, I will never forget how supportive and good they were to us,” Mazen says.
The Brave Heart Fund does not choose the patients who should receive the aid. The process is extensive and long in order to ensure the appropriate funds go to each family. First, a family pediatrician discovers the heart problem and refers the child to a center specialized in cardiac care. Once the family finds out what specific treatment their child needs, the family will know the surgery needed and then approach various organizations for assistance. According to Atallah, the Ministry of Health provides financial support to families who need the aid in order to pay for the surgery, but this aid only covers a portion of the total costs of the operations.
“For instance, a family may qualify for support from the Ministry of Health, but still needs to fund a small part of the surgery. This amount is inaccessible to a large number of citizens. This is where Brave Heart kicks in. The fund helps patients who are in need financially. We have to cater to the neediest,” explains Atallah.
Attallah says the family will be directed to social institution at AUB. Here she emphasizes there is no “wasta” or special treatment and each family is given a background check to ensure the money is going where it is most needed.
“Brave Heart is a patient fund at AUBMC that is open to any child in need without any discrimination (as to religion, nationality , gender or other). Furthermore, children born to Lebanese mothers and non-Lebanese fathers do not benefit from government support, and we find it quite unacceptable to exclude any child.
With vulnerable adults and children often caught in political, religious and social issues, Atallah emphasizes that when it comes to medical treatment, no child's life should be jeopardized because of his or her background.
“On a humanitarian level,all children deserve an equal chance to get medical treatment regardless of national or religious belonging,” Atallah says.
Mazen emphasizes his gratefulness to the Brave Heart Fund and the AUBMC for assisting in the difficult time in his daughter's life. When his daughter's health was unknown, he turned to the only person who could provide comfort.
“Dr Fadi Bitar was very helpful and reassured us. But as soon as they told us about the first surgery, I was honest I told him I couldn't afford it. He told me don't worry about it, I think, overall I had payed 60 000 LL. We didn't pay anything, I mean I don't know how I would've done without them,” explains Mazen.
While saving a child's life is at forefront of AUBMC mission, Dr. Bitar says it doesn't come without challenges that often overshadow that efforts accomplished by his team. He points out that maintaining and developing his cardiology team is one of the main challenges he is continually working on.
“It is extremely important to develop a multi-disciplinary team which includes the cardiologists, the surgeons, and the anesthesiologists nurses, and all other appropriate technology to get the best results. Now, as of today, the heart center is celebrating its 20th anniversary. We started in 1995 to 2015, we have really come along in these 20 years,” Bitar says proudly.
Because of the new technology and research conducted by researchers at AUBMC, Bitar has seen an increase in congenital heart disease detection. As the only center in Lebanon that provides comprehensive care for cardiac patients, the demand for care has increased naturally.
“Our workload has increased and our financial burden is increasing and I can tell you, in the last two years we spent double the amount that we used to. People from the country are coming to us because of the treatment provided by the AUBMC team,” Bitar says.
The Brave Heart Fund and the AUBMC are both equally sharing the financial burden that comes with being a top cardiac institution in the region.
“In the past 18 months, we have had a huge surge in the amount of surgeries performed and basically Brave Heart's contribution to these surgeries have almost doubled last year. It took a toll on our budget. We are not a rich fund in any way or form. We were ahead of our surgeries by six to nine months, which meant that every year we had to fundraise, because we had to bring in the money for the year. We do not have a long term horizon,” Atallah says.
As more children are diagnosed with congenital heart disease, the Brave Heart Fund and the AUBMC center are doing their best to provide adequate care and funding for each child who seeks treatment.
“Now that I talk about, I can't hold back the tears,” Mazen says as he starts to cry, “it gives me goosebumps. Our life changed completely, and the hardest thing was to see her scared or anticipating the operation. We used to tell her 'Don't worry darling, it's for your own good, you will feel better.' We couldn't tell anyone, you know how the society is, they talk too much and are judgmental. But Lama used to be a mirage, now she is healthy and happy and we are very grateful.”