Baby Ortyl: Day 6: Wendy's Story

I sat down for a chat with Wendy in the ICU. Alejandra, a patient young woman who volunteers with Helping Hands of Honduras served as translator. Wendy is the mother of 15-month-old Sebastian. (I took photos of Sebastian in the clinic on Day 2). Dr. Fenton repaired Sebastian’s ASD on Wednesday morning, 10/23/2013.

Wendy, on Wednesday after Sebastian's surgery.

At Sebastian’s 7-day-old visit to the pediatrician Wendy learned that he had a heart condition. Medication was the only intervention recommended. There is no family history of heart defects. Wendy is an educated woman, an attorney. She was unconvinced by the pediatrician’s recommendation so she began researching Sebastian’s diagnosis on the internet. Sebastian was examined by five pediatrician’s and cardiologists before they found Helping Hands for Honduras.

Wendy’s cousin, who works in a hospital in a city 2 hours away told her that a brigata (mission) was coming to Tegucigalpa to perform by-pass surgery on adults. Wendy brought Sebastian and all of his records to the clinic for evaluation. The cardiologist sent her to the Teaching Hospital in Tegucigalpa for an echocardiogram and and electrocardiogram. With these test results available, the doctor told Wendy that Sebastian did not need heart surgery. She didn’t like that opinion so she kept searching. They told her to come to Hospital del Torax (the hospital where ICHF stages it's clinic and OR), to the clinic run by Helping Hands of Honduras. (see an upcoming blog on Helping Hands)

At two months of age Sebastian was evaluated by Drs. Fenton (cardiothoracic surgeon) and De Sessa, (cardiologist) who are members of the International Children’s Heart Foundation (ICHF) working in the Helping Hands for Honduras clinic at Hospital del Torax, in Tegucigalpa, Honduras. These doctors diagnosed Sebastian with two conditions: one was improving on it’s own, the other, an ASD, would eventually need to be repaired. Wendy finally felt relief, sensing that these doctors had finally performed a thorough cardiac assessment and correctly diagnosed Sebastian’s problem. They told Wendy to bring Sebastian back to the Helping Hands clinic approximately every 3 months, each time an ICHF mission returned to Tegucigalpa.

As Sebastian grew Wendy noticed some signs of heart problems that weren’t present with her two older children. Typically he could not finish an entire baby bottle at feedings, he tired quickly when he moved around, and when she introduced solid foods they had to be blended because he would start to choke when trying to chew solids. His weight has consistently been about 3 pounds under normal weight for his size.

As Wendy continued to bring Sebastian back for his follow up evaluations she hoped that she would be told that he no longer needed surgery. She was anticipating that the surgery would be done in August of 2013. But an outbreak of Dengue Fever caused the mission to be cancelled, and pushed back to October. (We were told that 5 children on the ICHF surgery roster for the rescheduled trip died in the interim due to Dengue.) When the mission was cancelled Wendy felt a sense of desperation. She said that she “kept him in a bubble, did everything....how do you say?....to a ‘T’” to keep him healthy so he would be a candidate for surgery when the mission returned.

I asked Wendy how she felt when the time came to hand Sebastian over to the OR team for his surgery. She said that she felt a normal amount of nervousness, but she also felt relief. She had complete trust in Sebastian’s cardiovascular surgeon, Dr. Kathleen Fenton (more in an upcoming blog), who told her there was only a 2% risk factor. Wendy is also a deeply faith-filled Catholic and was placing Sebastian’s care in God’s hands.

Would most Honduran mothers have persisted as you have in obtaining the best care for their children? Wendy says probably not because most Honduran women are more conforming, and don’t have the education, or the curiosity. She explained that the poor people do not question the doctors, and many of the doctors don’t know enough about cardiac issue to make accurate diagnoses. (She really said, “They suck.”)

You have acquired a great deal of information about pediatric cardiac defects in your efforts to obtain the treatment that Sebastian has needed? How will you use all of that information now? Wendy said that she will definitely continue to tell others about Helping Hands of Honduras and ICHF...and send them to upcoming missions. In her opinion the local physicians only care about money and the cost of evaluations and procedures is more than what the average Honduran can afford. A routine cardiac evaluation in Honduras costs about $500, while the per capital income of a Honduran family is about $350/mo ($7000 Limpera)

What advice would you give to other mothers, even in the United States? “Give wisdom to others. Always look for a second opinion. If you don’t like what the doctor told you, be curious, do your research, ask questions without being ashamed.” (The first cardiologist told Wendy that Sebastian would be dead in 60 days.)

“It doesn’t matter if we are rich or poor. The greatest gift is the love of a mother.”