Posted by Cecilia Leger on 3:10 AM
I just sent some information about early intervention to a family whose little boy has been newly diagnosed with cortical dysplasia. So tonight I’m thinking of Lauro, a child on my caseload two years ago, who had the same diagnosis. The cortical dysplasia (neurologic disorder causing seizures) was the least of Lauro’s troubles. He was a micro preemie, born around 25 weeks gestation (if memory serves) with a birth weight of less than 1200 grams. By the time he came to me he was already 15 months old and in relative good health: he had bilateral hearing loss, so he needed to wear hearing aids at all times; he had sleep apnea, so he needed to be hooked up to a monitor any time he slept; he needed oxygen, although they were trying to reduce the amount; and with medication his seizures were down to only five to seven per day. Smooth sailing.

When I received the referral from the hospital and tried to make contact with the family, I found that the only phone number we had was disconnected. I sent a letter to the home and asked that they try to reach me, but no one did. I visited and found no one at home. At this point I should have closed the case, but I just kept going back whenever I was in the neighborhood and one day, I found them!

This family was already on the edge. The mother (let’s call her Maria) was only 20 and she had three children: a four year old in Mexico, Lauro, and Gabriel, who was eight days old when I met them. They shared the apartment with another couple who also had a little one: a girl whose name I don’t remember and who was almost two. After I explained our program, Maria asked for my help in filling out a form for Lauro’s social security disability benefits. It was a developmental questionnaire that asked fairly simple things about Lauro’s current abilities: when he started smiling, what sounds he was making, how much milk he was drinking and how often….that sort of thing. The scary thing was that Maria didn’t seem to know any of the answers.

It was hard to work with this family as they could only keep a cell phone turned on for about one week out of the month, so most conversations had to happen in person. I started visiting them at night so that I had a better chance to find them at home. Lauro started receiving once weekly visits from a special education teacher and twice monthly visits from a physical therapist (our program is home-based). But Maria kept missing appointments. With us, with Lauro’s specialists at the hospital. She had missed his RSV shots (preemies are particularly susceptible during flu season).

Worse yet, I got a call from the apnea clinic: the script from the monitor Lauro was supposed to use anytime he slept showed that the machine hadn’t been turned on in a month. Didn’t Maria realize that he could stop breathing at any time and she would never know?

As a team, her providers and I poured tons of time to make sure Lauro would get the best shot at life. We taught Maria basic life skills, helped her keep appointments, found her counseling when we realized she was suffering from post partum depression, tried to convince her to move out when we realized she was a victim of domestic violence, helped her apply for food stamps and other public assistance, and a myriad of other things. She was so young and so disoriented that I think all of us felt motherly toward her.

Slowly, Maria began to accept more responsibility. She learned how to keep a calendar and became more consistent about being home for her therapy appointments with our program. She started keeping all important documents in a binder we gave her. She told us she was using the apnea monitor and oxygen as she was supposed to. Maria even started selling phone cards from home so she could have some cash.

But our real joy came from Lauro. Lauro was making visible progress week to week, which is so rare! Most kids have a hard time adjusting to the hearing aids and fuss to take them out. Not Lauro! It was as if he understood that the aids were his entry into the world. He started cooing and babbling within weeks of getting his hearing aids. He enjoyed all of the toys the special educator brought, was always eager to play with her, and learned quickly. Even his PT sessions went well (for the most part), and soon he was rolling over all by himself and bearing weight on his legs when standing. We had started getting information from the neurologist about possible surgery to control his seizures.

He was almost sitting independently when he died. From a cold.

First Lauro’s cousin (the other little girl who lived in the apartment) got sick. Then Gabriel, Lauro’s brother. On Thursday, Lauro fell ill. By Friday morning, he was dead. When he got sick, he started vomiting; then he got a fever (Maria never knew how high since she didn’t have a thermometer in the house); then he got diarrhea. Because he was crying all night, Maria took off his oxygen so she could hold him in her arms as she paced around the room, hoping that would soothe him. It worked, she thought, because by around 5 AM, he had stopped crying and was finally asleep. She didn’t dare place him on oxygen again because she feared he’d awaken and he was sick….he needed the rest. She made plans to take him to the pediatrician’s office in the morning. But not until after his therapy session at 9. After all, how many times had we told her how important it was for her not to miss these appointments with us?

By the time the educator from our program arrived at her house Friday morning, Lauro’s lips were blue and he was unresponsive. She called 911 and began CPR. He was declared dead at the hospital a few minutes after the ambulance arrived with him. And there was Gabriel to worry about. When Maria mentioned that he, too, was ill, they worried that Lauro had had meningitis. Another ambulance was dispatched to the home and Gabriel was taken to Childrens Hospital in DC where they were equipped to do the necessary testing. Maria had to leave the body of her dead child at the neighborhood hospital so that she could go be with her other sick child who she now feared might die too.

I met her there and she was more bewildered than grieving. No one had explained to her why Lauro had died. No one had said anything about how long it would take to figure out if Gabriel might be next. Her world had been destroyed in less than 12 hours. It took six days for tests to reveal that Gabriel was fine and he could be released from the hospital; there was no meningitis. Lauro’s death was the result of a bad cold and some poor choices. The hardest thing I’ve ever had to do in my life was explain to Maria why Lauro had died. I’ll never forget the look in her eyes as it all started to make sense: the missing RSV shots, the dehydration from the vomiting and diarrhea, his need for the oxygen from the tank.

She and I sat on the cold floor of Gabriel’s hospital room, holding each other and crying. I couldn’t think of a single word to comfort her or assuage the guilt I knew she was feeling.

Some of my other kids have died; families with whom I’ve been just as involved. When Roberto’s mom decided to end life support, she waited until I arrived at the hospital. When Melissa died, I’m the one that made the funeral arrangements. But Roberto was never going to recover and Melissa’s disorder was degenerative. So, by comparison, Lauro’s death just seemed so unfair. Not when we had such plans for him! Not when we could see such progress….

It’s been two years and I guess I’m supposed to have more perspective now. Wisdom born of difficulty and sorrow. Oh, I can rationalize and I know that God can turn our sorrow around and help us grow from adversity and all that. I know we belong to eternity and that there’s a glorious promise of the day when death won’t exist.

But you know what? Sometimes sad things are sad no matter how much time has passed or how much wisdom has been gained. And it’s appropriate that the memory of a little boy’s death should still bring me to tears.


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