To Do List Before Heading to Philly

1- Pick up the car - check
2- Make hotel reservations - check
3- Make sure Valeria sits comfortably in her car seat - check
4- Picking up the mother-in-law at La Guardia Airport - Not check but almost

We're Having Surgery in May

The lobby at Shriners Hospital was quiet, and it was just Natacha, Valeria, and I waiting there in the chill month of March. On the wall, there was a long horizontal painting of joyful kids in crutches and wheel chairs arriving to the finish line helped by men wearing fez, the red mason hat, which looks like a bucket upside down; it might look a bit funny, but the task that the masonry do is extremely serious; it raises money for the Shriner’s Hospital for Children like this one in Philadelphia, which we were visiting for the first time.

Part of the painting in the lobby of Shriners Hospital for Children in Philadelphia

After filling out forms, we went to the doctors waiting area. We sat in front of a teenage girl, who had prosthetic legs. She was missing her left forearm, and her right arm was almost complete, except that she only had two fingers in her hand. All this didn’t stop her from texting on her cel phone super fast.  When she and her mother stood up to leave; the elevator door, which was about twenty feet away, opened, and the girl ran to hold it for her mom, “Come’on mom!” she said. I was so glad to see that she was just a typical hyperactive teenager.

A few minutes later we were called into the doctor’s office. There was a patient’s bed cover with paper, which Valeria prompted to rip apart; I threw away the mess before the doctor came in, rolled over more paper on the bed, but hurricane Valeria was quick to rip everything apart again, and that was when Dr. Alburger, the foot surgeon, came in. In his early sixties, with silver hair, and a gentle voice, Dr. Alburger didn’t mind the mess. “She’s very strong; she kicks hard”, he said, examining her legs. “Do you have the X-Rays?” he asked. I gave him the CD, which his assistant took away to open up. I also gave him the X-Rays plaques we had brought from Cuba, old school, but effective; he put it against the light box, and saw what Valeria had.

He mentioned the mirror foot, how he was going to operate, and then he added, “On the right foot, I’ll do the surgery on the inside part, so the scar is not visible.” That comment was unexpected because I was more concern on the functionality of the foot, rather than the esthetics, but he was concerned about all the angles, which hinted we were in good hands.

“We can go into surgery anytime; talk to my assistant to set up a day.” He said.

“But we thought we had to wait until she’s a year old.” I mentioned.

“We can do it anytime.” He responded.

After he left, his assistant told us May was opened. She also said, “the surgery will take from 3 to 4 hours. She will stay over night with one of the parents, and will have a cast for 3 or 4 weeks.”

We were happy after meeting Dr. Alburger, and astonished to have the surgery soon. Shriners Hospital had been great, and we still had to meet the hand surgeon.

Valeria is unaware of the harm she has caused to the extraordinary people of Shriners Hospital for Children

Valeria Ripping Apart Shriners Hospital of Philadelphia

Natacha watches Valeria rip Shiners Hospital of Philadelphia apart; don't tell the doctors

We've Found the Right Children Hospital

The first time we heard the term “mirror foot” came from Dr. Miki of the Miami Children Hospital. He also told Natacha and I that he could operate the hands and create the thumbs—which made us extremely happy since we didn't know it could be done—but would have to find a foot surgeon in Miami, who specialized in what we needed. We told him about our wish of having Valeria’s surgery in that city, where we have family, but he made a comment that completely changed the course of our search, “if Valeria were my daughter, I’d take her to Shriners,” he said.

Shiners Hospital for Children is one of the top health care centers in the world, specializing in orthopedics, burn care, cleft lip and palate, and spinal cord injury. They also stand out for their warm hospitality; they showcase that on their website, and after meeting them, we concur with it.

But before knowing them, and right after seeing Dr. Miki, we first focused on researching about “mirror foot” and Shriners Hospital.

On “mirror foot,” we found out how rare the case was; it’s usually associated with different syndromes; fortunately Valeria, who has gone through detailed genealogical tests at the New York Presbyterian Hospital, has shown no positive signs of syndromes at all.

We found also different articles about some successfully treated cases, and one of them called our attention; it was about Hidehiko Kawabata, M.D. Vice President, of the Japanese Society for Surgery of the Hand. We contacted him with a long email, explaining our case as best as possible; he responded with a short and concise line, “I recommend Dr. Scott of Shriners Hospital in Philadelphia.”

From Dr. Kawabata’s email along with Dr. Miki’s strong advice and some research of ours, we realized how important Shriners Hospital was. Now, we had to contact them, and really hope they would take our case.

And they did it.

Valeria and Natacha at the Shriners Hospital for Children in Philadelphia

We're finally out to enjoy Brooklyn

Valeria and Natacha enjoying the spring in Brooklyn, New York

When spring lasts all year long

My everyday walk to the C train in Brooklyn had a pleasant twist this morning; spring had finally arrived. The seeming never ending months when I had to dress like an astronaut to go out were now behind; months in which I thought about moving to an all year long warm place like Cuba, and appreciate the unfamiliar past experiences like the lack of privacy.

When I was in Bayamo for the first time, we went to the Céspedes Hospital to run some tests with Natacha, who was expecting Valeria. Waiting in the lobby, right outside the doctor’s office, I noticed that the X ray box light was on a wall; and then, every so often doctors came out of their offices to see the X rays with their patients, and discuss them in front of the passer byers.

“Do you want to see the intensive care unit?” Loly, my mother-in-law asked me.

“Yes,” I answered amazed that we could visit that unit freely.

There were no door or security personnel restricting us from accessing to the long rectangular room that was the intensive care unit. There were about a dozen beds on either side, and while some patients were sleeping, others were talking to their visitors. It was pretty vivid for a unit where I always assumed patients had to enjoy calmness.

A moment later, we were called in to see the doctor, but not by ourselves, with a woman in her mid-thirties and her mom. I thought they had to tell something quick to the doctor, and leave, but they sat next to Natacha and I.

Without acknowledging us, the doctor brought up the results of whatever test the woman had, and told her, “The results came out alright; your pain is nothing; you’re fine.” “But doctor, my dad suffered back pain all his life; I’m concerned I’m suffering of the same problem,” she responded. The doctor assured her that she was fine, and when finally convinced, she got from her purse a plastic bag with a homemade juice and sandwich. “Here’s a little detail for you, doctor,” she said. “Oh, no, you shouldn’t have,” he responded. That offering and refusal game was going on back and forth for a bit; “fine, if nobody wants it, I’ll take it,” I thought.

After the doctor finally accepted the gift, the woman and her mom left; that was a relief because I was worried about having some tests with some strangers witnessing that.

There was also an experience that I found remarkable. Rather than sending texts, and finding out what everybody is doing on Facebook, people connected in person. Doors of houses tend to be open for the most part of the day; letting the air circulate has to do with that, but that makes friends who are just passing by, stop for a quick cafecito or cup of coffee, and enjoy a little chat. Different neighbors came to watch the Brazilian soap operas on different nights, providing a variety of topics for conversation.

With spring here, I love New York again, and I’m happy with the privacy that the health system provides, but I miss the in-person connection, something that with a warm weather, I can begin experiencing more often.

Natacha and Loly at the ultrasound test in Bayamo, Cuba

A Happy Baby

Valeria is happy with her milk

Getting a Doctor in Cuba

We’ve decided to pass on Dr. Salles excellent option. By continuing our search, an even better opportunity has presented before us in Philadelphia. Getting a doctor in Cuba was a great learning experience, and there are a couple of recommendations that I’d give to anyone asking about this path:

1- Be ready to obey the system
On our second day in La Havana, a nurse knocked at our door. “Are Natacha, Valeria, and Gino Ginocchio here?” She asked in a commanding voice. She asked to see our passports, and when we had arrived and when we were planning to leave. After taking notes, she gave us two pieces of paper. “You must go tomorrow to the polyclinic to get tested”, she said. “Why?” We asked. “To ensure you’re ok; the baby doesn’t have to go.” We were concerned with the test, but we had to go otherwise they’d come back for us or wouldn’t let us leave the country.

The morning after we were at the polyclinic at 7 a.m., waiting in line at the blood test laboratory with about 20 people from Cuba. On the wall, there was a sign promoting healthy eating with images of vegetables. Suddenly an older person in line commented, “Look, they tell us to eat those vegetables, but where do we get them? I can’t find vegetables anywhere.” Another old man agreed with him, saying, “Yeah, all I see available in the street are peanuts; I don’t know where they get all those peanuts from; everybody is just selling peanuts; my neighbor got a job offer in the hospital, but she preferred selling peanuts; she makes much more money like that”.

After an hour, we were called in into a narrow room; the assistant pinched us in the finger with freshly unwrapped tiny metal blades, and got drops of blood on little flat glasses. I asked, “What is this test for?” “Malaria”, she answered, “we have reports it’s spreading in Africa.” Then she added, “if the test is positive, we’ll go to your house tomorrow; if it’s negative, this is it.”

We never heard from them again.   

2- Consider the weather

La Havana is extremely humid, and air conditioning is not available everywhere. Having a cast on with a 90 degrees weather and high humidity could require a lot of sacrifice. I’ve been twice to La Havana; the first time was in April, and I had to sleep with a fan blowing air all night. The second time was in January, and the weather was pleasant with a cooling breeze at night; it’s not the best to lie on a beach chair, but it’s convenient to lie on a hospital bed.

3- Do extensive research.

Dr. Salles came strongly recommended, and even though Internet is limited in Cuba, there’s information I was able to find out about him. Dr. Salles has published a study on the benefits of pyramidal energy; the study was done to a group of 251 people, and the results were positive. He also has published a study on a patient, who grew only one bone in the forearm rather than two, and the successful treatment he followed. I admit that out of both articles, the latter had more impact on me.

I hope these tips help someone interested in getting a doctor in Cuba; we could have treated Valeria's mirror foot in the Frank País Hospital there; it was a golden opportunity. But when looking for a doctor, you have to look for diamonds, and diamonds are not up for grabs on the surface, you have to dig dip to find them.

Valeria, Natacha and I at the Frank País Hospital in La Havana, Cuba

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