The fight was from this day

From this day, the fight of the Perezares family began. Sleepless nights followed day after day. Air passing through the tube inserted in the trachea. When the tube became blocked from secretion from the trachea, all would end. Geraldo and Patricia took turns sucking the tracheal secretion from the tube, so as to prevent the tube from being blocked.

Although on case-by-case, in the intensive care unit (ICU) of the Children’s Research Hospital of my practice, a nurse comes to suck the secretions from the tube every 10 to 60 minutes. Carlos’s parents repeated this procedure for a period of eight months. To do this well, the couple took a three-day intensive CPR (cardiopulmonary resuscitation) course in the U.S. They even learned how to pour liquid food directly into the stomach as a way of nutrient replenishment.

Why were these procedures not done at a hospital?  The reason lies in the fact that medical fees in the U.S. are extremely expensive. In Japan, one day under ICU costs 47,000 yen. Adding the suction procedures of the tracheal tube and nutrients through endoscopic gastrostomy to be 2,650 yen, this totals 49,650 yen. When medication and treatment is further imposed, the expenditures will be added up. However, due to various institutional and public benefits, the burden on the Japanese household amounts to almost none.

On the other hand in the U.S., one day under ICU amounts to $2,000 (approximately 200,000 yen). Treatment fee will be added.

Because nothing unusual was found in the fetus, Carlos was not under insurance.

As the couple spent their entire time overseeing him, their jobs were interrupted and were burdened by the high medical expenses – putting them in financial difficulties.

The big question for them was how to proceed with treatment. Dr. Bloss planned a second operation in March 1992 after Carlos had gained some weight, creating a possibility of excising the cysts in wider area. The couple, however, was hesitant.

“The blood vessels and nerves around the neck are of great importance. The fear of affecting the vessels and nerves are too large with surgery. In addition, unless the cysts are completely excised, the cyst will continue to spread. This means that the operations have to be repeated over and over.”

The couple then discussed the situation with Dr. Rodolfo Monrroy in Ciudad Juarez. Although Dr. Monrroy is a pediatrician, he was fully aware of the difficulty of treating lymphatic malformations.

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NPO International Lymphatic Malformations Network