Gina and the Broken System (Addendum)--May 16, 2021

July 20, 2021

Gina and the Broken System (Addendum)--May 16, 2021

Photo by John Carroll–May 16, 2021

This little girl is Gina.

Mom brought Gina to the clinic in Robillard for the first time two weeks ago. Gina’s body was bloated with fluid and her eyelids were very swollen.

Gina has nephrotic syndrome which is a kidney disease that causes people to spill lots of protein in their urine. There are many potential complications with nephrotic syndrome and each person with nephrotic syndrome has to be well managed with steroids and judicious diuretics. Attention to detail is very important.

During her first visit in clinic two weeks ago, things did not go smoothly due to a communication problem with Gina’s mother. And the tension in the clinic was not lost on Gina who sat stooped and swollen on a bench away from her mother and sobbed alone. It seemed to me that she knew she would be leaving the clinic with no medication to help her kidneys.

Mom and Gina left the clinic that day in a not-so-happy fashion.

A couple of days later, I called Gina’s mother and told her to take Gina to a nearby hospital and I promised her that if she did this, Haitian Hearts would pay Gina’s hospital bill.

A few days later, mother took Gina to this hospital where she remained for one or two days. And for some unknown reason, mother signed Gina out of the hospital and took her home yesterday.

So last night I called mother again and asked her if she would bring Gina back to our little clinic in Robillard today. Mother assured me that she would.

True to her word, mother brought Gina to clinic after church this morning. And Gina looked marvelous. I weighed her and her weight was down about 16 pounds from her initial visit. And she was smiling.

I asked mother what the hospital had done for Gina. She told me that they put in an IV needle in Gina’s arm and pushed some medication, but she did not know what. I assume they pushed furosemide, a strong diuretic, because Gina urinated a lot afterward and she has lost a lot of weight very quickly.

At the hospital, Gina also had labs drawn, but mother was not given any results before they left. And mother told me that Gina currently is not taking any medication at all.

Today I discussed Gina’s case with another Haitian doctor who states that she is hesitant to manage Gina’s case here in Robillard but will send her to yet another hospital in the area with a good pediatric team, labs, and better resources than we have in Robillard.

So many things have been done poorly in the last two weeks regarding Gina’s case. But in spite of us and the daily chaos and drama in Haiti, Gina is much improved.

Gina and her mom are in this fight quite alone. Gina really needs a good social worker or case manager. They have no one who will be able to intercede for them to know the details which often make or break a case like this. Someone needs to sit down and educate Gina’s mom on what this disease does and what she can expect. And they need to make sure Gina has her labs written down and shared with everyone involved in Gina’s case.

And what Haiti needs is a national health care plan where patients like Gina and her mom pay nothing for medical care and medical records are available on a national digital database. This information would allow Haitian doctors to utilize their handheld mobile devices to obtain their patient’s medical records quickly and not have to guess at what may have happened in another health care setting.

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Addendum–

Gina’s mom took her to the second hospital a couple of days later. And even though I had contacted the second hospital director by email and told him about Gina and told him that I would pay her bill for admission, labs, etc., (as I had done at the first hospital), it still didn’t work out. Gina’s mom couldn’t “access the system” of the second hospital to get Gina evaluated, and they came home again empty-handed. Extremely poor people such as Gina and her mom have no idea how to “access systems” and when communication fails, as it often does, no care is rendered.

The poor around the world expect very little and that is usually what they get.

As a physician, I don’t do the patient much good if I diagnose the problem but am unable to deliver care. And with Gina, even with maximal support by me including emails to both hospital directors, and money to pay for their medical care, it fell through for Gina. (We are still calling Gina’s mother and attempting to find a solution.)

Medicine needs to be decentralized (moved away from hospitals) not only in Haiti but everywhere. If the Robillard clinic were improved regarding diagnostics, Gina and her mom could have potentially sidestepped hospital care and received all of her care in Robillard.

Could any of the above happen in Haiti…such as social workers, digital medical records, and improved local clinics? Of course it could. But the mindset and hearts of people in control of the country need to change before anything constructive will occur. Gina and her mother need to be viewed as human beings and provided the basics in all aspects of their lives before medical care improves in Haiti.

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Addendum–May 24, 2021–

Mother texted me on WhatsApp last night. She told me that Gina did go to the second hospital again and she was given care. And she said Gina has no more edema and is doing very well. She wants to know if I (Haitian Hearts) will pay for Gina’s return appointment in mid-June to the second hospital. I told her that we would be more than happy to do this.

John A. Carroll, MD

www.haitianhearts.org

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