Clairia

Many of you are familiar with the story of Clairia, some are not. Whether you are familiar or not, I give you some background to today’s events. Clairia was seven months old when I admitted her to the hospital last year for severe malnutrition. I was the first doctor to ever examine Clairia, and, therefore, I was the one fated to discover that she had a major heart murmur. The nature of that heart murmur was ultimately delineated: Clairia had a large ventricular septal defect (VSD), and pulmonary stenosis. Clairia would die at a young age from worsening heart failure if her congenital heart disease was not repaired; however, she would lead a normal life if it was repaired. It was as simple as that.

     Cardiac surgery does not exist in Burundi. Therefore, Clairia would have to go elsewhere. It was through the efforts of several people and two organizations that this  “elsewhere” was found. That elsewhere was a place called Israel. There is an organization in Israel called SACH (Save A Child’s Heart). This organization brings children to Israel for surgery they could not get at home. SACH agreed to bring Clairia to Israel for her surgery. That was not the end of the story. More funding was necessary. That funding was provided by an organization based in Los Angeles called Mending Kids International (MKI).

     Clairia could now go where no Burundian child had gone before her: to have heart surgery. The plan was for her mother to accompany her to Israel, and the two of them would stay in Israel for four months. All seemed to be set. Her mother seemed to be on board with the plan. That was when Clairia’s heart train was derailed. Clairia’s mother became pregnant. There was no way she could go with her to Israel. Perhaps there was someone else who could take her mother’s place, maybe a family member. There were various ideas, but none came to fruition. There was talk of a cousin taking her after she finished school, but this appeared to be just talk.

     We did not have the luxury of waiting. Clairia was on a time clock. She needed to have that surgery before she suffered irreversible organ damage as a result of her heart condition. Yet there was no solution. The money was there, but we had no one to accompany her to Israel. Clairia’s mother could not travel to Israel when she was pregnant, not could she go with Clairia after the baby was born. She would have to stay home to take care of the baby. We were at an insurmountable impasse.

     Clairia’s mother was at home last Friday, when she went into labor. Her baby was then at term. She started to walk to the local health center, where she would deliver the baby. The trek to that health center was long and arduous. I can attest to the difficulty of that trek, because I saw today the path that Clairia’s mother took. It was all uphill over rough and uneven terrain. It would be at least 45 minutes, maybe more, over that terrain before she would reach the health center. This would have been a demanding journey for anyone, but that much more demanding for a woman in the full throes of labor.

     It was at some point during that trek that Clairia’s mother lost the baby. That is the way it appears, because the baby was not moving when Clairia’s mother reached the sanctuary of the Health Center. There was no fetal heartbeat when they examined Clairia’s mother, and the baby was eventually delivered stillborn.

     Yesterday, Dr. Cyriaque, nurse Achel, and I drove to Clairia's house. We needed to talk to the parents about Clairia. You may think that we should have allowed more time to pass before we intruded on the mother’s grief. Yet we could not do that. We dared not do that, because Clairia herself does not have the time to wait. It is time that works against her, not for her.

So yesterday we drove to Clairia’s house. However, it was not yesterday that we reached Clairia’s house. We had to stop a few minutes from the house, because the bridge going to her house was out. We turned around and went home.

Today, Cyriaque insisted that we go again, this time by a longer route. We did so. Little did I know that his longer route involved a thirty minute ride on a narrow, dirt road filled with rocks. On one side of the road was the ominous presence of a cliff with a sheer drop into a chasm. The narrowness of the road left little space between our van and the precipice of the cliff.

Yet we eventually made it to the village where Clairia lived. Achel walked down the steep hill to her house, and brought Clairia, her mother and father back up the hill with them. Dr. Cyriaque and I then sat in the back of the van with Clairia and her parents. Clairia’s mother’s eyes told me all that I needed to know, for those eyes were swollen from crying.

You can accuse us of insensitivity in forcing the issue so soon after the death of their unborn child. But is it insensitive to think more about the needs of the living, even in the face of death? Is it insensitive to consider the health of a nineteen month little girl who desperately requires not just our help, but also the expert help of those surgeons in far off Israel? I believe not.

We sat there, the five of us, for a long time in the back of that van. I briefly examined Clairia as we talked. She has worsened in the year that I saw her. The murmur is louder, and can be heard even without a stethoscope. All I had to do was put my ear to her chest. I then heard the same harsh sounds that a saw makes as it cuts wood. I also saw in Clairia the first, subtle signs of impending heart failure.

Clairia continues, as of now, to be an active, playful, and happy child; however, I am concerned that the time will come all too soon when her failing heart will prevent her from being that active, playful, and happy child. It is for that reason that Clairia needs her surgery now.

We discussed Clairia’s situation at length with her parents. Our efforts were gentle but forceful. I believe that, by virtue of those efforts, we convinced her parents that Clairia must have her surgery as soon as possible. Clairia's mother has now agreed to take Clairia to Israel for the surgery.

I know that the ordeal of losing a child is unimaginably difficult for anyone. Yet Clairia’s mother sees what Clairia's future will be without the surgery. My goal is to get Clairia and her mother into the clinic as soon as possible, and work out the logistics from there. They were not ready to leave their home today, and I can understand why. But Clairia's mother promised to bring Clairia to the clinic on Wednesday. We will send a vehicle to get the two of them.

I had lost hope that Clairia's surgery would happen. It is only today that, for the first time, I am cautiously optimistic. I feel that if we can get Clairia and her mother to the clinic, the necessary arrangements can be made. Let us hope that the promises of today will be met on Wednesday.

It is a tragedy that Clairia's mother lost her baby during childbirth, yet that tragedy may give life to Clairia; that out of death shall come life; that out of the despair of a lost child has come hope for Clairia. The story of Clairia and her stillborn sibling is a story of tragedy, but that tragedy may bring the triumph of Clairia’s successful heart surgery.

Today has been a good news day, and I anticipate that it will be an even better news day on Wednesday. It is then that I shall hopefully see Clairia and her mother welcomed into the open arms of our clinic. It is then that I will know that a child’s life will be saved.

I leave you with pictures of Clairia, I want you to see for yourself the child who may well be the first Burundian child to have heart surgery.

The first is of Clairia in the van, as Cyriaque and I talked to her parents. 

The next three are various pictures of Clairia, me, and her family.