Bombs, Bad Places and Blue Babies

Friday July 16, 2010 09:13:37 AM

Imagine for a moment that you are a parent in some god-forsaken country in the world where the birth of your child will bring joy into your miserable existence. You have waited 9 long months for this little bundle of joy to come into your world and brighten every gloomy day, a gift that will make you happy despite your surroundings.

The day finally arrives and your gift arrives, you gaze upon this child given to you by god and your heart swells with joy, but wait, the last child was not that funny color, nor did it breath so fast, is something wrong?! You're frantic, you call the nurse to the child's side and ask "Is this normal, what is wrong with my baby?" The nurse is alarmed, something "appears to be wrong", and so she calls the doctor. The doctor arrives all smiles as he understands the joy this child will bring to you living in the misery you call home. But the smile quickly disappears as he gazes on the source of your anxiety. Quickly, he pulls out his stethoscope, examines the child and slowly his countenance changes to one of concern and dismay. "I think your child has a heart problem, if he survives the next few days we will arrange for you to travel to the capital to have the child examined more closely. However, if the child does have a heart problem we cannot help you, there are no specialists in our country to operate on your child Hopefully, I am wrong and these problems will resolve in a day or two."

Your world explodes, your bundle of joy may have a problem that cannot be fixed in your country? How quickly your dreams are smashed, the future that seemed so bright suddenly filled with clouds of doubt and concern for your new baby. Minutes drag into hours and hours fill the never ending day. Surely this color will change, surely the baby will stop breathing like a panting dog, but no, this is not to be. You and your spouse watch and wait, praying for a miracle, asking everyone if they have seen this before? Soon you find that there have been others who suffered the same fate. They too arrived at the hospital as the fat and happy couple only to depart as two skeletons of their former selves, carrying a small bundle to the train station. Hopefully, they tell you, all three of you will return, and not two parents and with a small wooden box.
No miracle appears, your baby cannot even suckle long enough to get nourishment, the requirements to breathe prevent it from spending more than a few seconds at your breast. That hideous bluish tint has not disappeared, you used to like the color blue, but not now, never again, blue is killing your baby.

Three days after his first visit your doctor returns, he hands you a slip of paper with an address in the capital and tells you he has arranged an examination for the child, and if you hurry you can just catch the overnight train there. You can easily read the gravity of the situation in the creases of his face and the sadness of his eyes. He wishes you good luck with a sincerity that bespeaks his deep sorrow for you and your child.

The two of you gather your meager possessions, bundle up the baby and leave the hospital as quickly as possible. You call your parents, telling them you are going to the capital for a few days to have the baby examined, can they please care for your other child and explain that mommy and daddy will be back with her new baby brother in a few days. You marvel at the fact that technology allows you to call while going to the train station, but wonder why technology cannot care for your baby. You have all your hard earned savings in your pocket, it will have to do, you have tickets to buy, will need a place to stay, food to eat and an examination to pay for, how can this have happened?

Arriving at the train station you cannot believe your luck, there is one sleeper left, you quickly pay without an argument over what you know is an inflated price. The clerk behind the window will not be the first to benefit from your misfortune. You board the train and quickly settle into your sleeper, made for one it is a small palace for the three of you compared to two spots on a rigid bench. The departure whistles, the baby who cries briefly, turns even more blue, you are both alarmed at how dark he becomes. The gentle rocking of the train soon soothes him and he drops off to sleep.

You look at each other with unsaid questions, what did we do to cause this to happen? Your ignorance of congenital heart disease stands as a dark demon telling you this is your fault; God has done this because of some distant wrong you committed.

The train arrives early the next morning and you find breakfast at a corner stand, waiting eagerly for the clinic to open. The day has dawned with new hope, the air is crisp, the sky is cloudless and your child although a little more blue is breathing more slowly and deeply. You arrive at the clinic to find a long line of parents with children in their arms or in tow. Many are blue, most are a little breathless, and all cling to their parents in desperation.

You take your place in line and are greeted by the woman in front of you, who has the hand of a child who can only be described as purple, you have never seen such a color in a human before. As the mother is talking you realize that you are not really listening to her, you are fixed on the fingers of the child whose hand she is holding. The first thing that comes to you mind to describe the child's finger is clubs; little purple clubs have replaced this child's fingers. Each digit is very broad across the nail bed, and the nail bed itself is deeply purple, cyanotic, you remember the word from a talk the first doctor gave you in the hospital at home, an eon ago. Yes, cyanotic because the child is not getting enough oxygen in the blood because of the heart defect. Your trance is broken when you notice that you no longer hear the other woman talking and realize she has fixed her gaze on her child's hands. She smiles and says "Yes this is one of the changes that happen when your body is starved for oxygen for all 7 years of your life."

The morning progresses and you finally enter the building, register your child and for the first time ever hand your baby off to someone else, who you have to trust if you want the evaluation to begin. A chest x-ray, electrocardiogram and blood work is performed before you are finally re-united with your child for the all important echocardiogram. The local expert introduces himself to you, behind him on the wall are all his "certificates of specialty post doctoral education", impressive until you read them and realize he did 1 month here and 2 months there, and actually is not a Board Certified, from any country, Pediatric Cardiologist.

As you lay your baby down on the exam table you realize how anxious you are about the impending study, because as yet no one has told you that your child absolutely has a heart defect. The lights in the room are turned off so that the image of the echo can be better seen on the screen. The shadows appear and the doctor describes to you in medical jargon each of the different structures he thinks he sees in the shadow of your child's heart. Then comes the moment, the aha! Indeed your child has a heart defect, and to make matters worse it is a complex defect that will require multiple surgical procedures to correct.

Your last bastion of hope has been breached; it is a good thing the lights are down, so no one can see the tears of a father as he realizes his son is in terrible trouble. You are lost in your own world not hearing the doctor continue to describe your son's heart defect using words you never knew existed. Your wife, crying softly into her kerchief, seeks and finds your hand for comfort, for security, for the hope that simply is not there. "What? What was that you said, a team of experts is coming here in 6 months to operate on children with heart disease?" Can this be true, can our son be on that list, will he last that long, what will it cost? These questions run through your mind before you can even think to ask the doctor. There is hope, both of you recognize it, and can visualize it, if only you can capture it.

The exam finished you and your husband speak to the local doctor, indeed a team of pediatric heart experts are coming from America in a few months to operate on children with heart disease, right here in the capital. The list is being constructed of children who will receive this miracle, and there is room for your child. The doctor gives you a prescription for some medicines which will make your child better and allow him to survive until the visiting team arrives. He gives you his contact information and tells you to return every month until the team arrives so he can re-examine the child and adjust the medications as necessary.

You are ecstatic, your child now has a chance and your hope is restored! You will have to wait until tomorrow to catch the train home and spend more of your savings on a place for you, your wife and child to stay overnight. But first you must pay the bill for the evaluation, the price is staggering, you will just have enough money to pay the bill, get the hotel and the train tickets home, with some left over to cover the costs of the medications so important for your child's health.

The medicines turn out to be more expensive than you thought and now your funds are nearly depleted. It seems that you will need to sleep outside tonight, because you just have enough for the train tickets home.

The weeks pass slowly, your anticipation growing each day for the next visit to the capital for another examination of your child. You have had to take up two jobs now, as the expense of the medicines, the train tickets and the examination will exceed what you can save with just one job. Your wife must stay with your child all the day, not trusting anyone to give the medications correctly except her. You make the trip to the doctor in the capital, no change in his diagnosis, a little adjustment is made in the medications as your child has grown some. You return home and settle into routine, monthly visits, no real change for the next two visits except for some minor medication adjustments. So it continues until month 4, on this visit the doctor in the capital tells your child has not gained any weight since the last exam, his heart is enlarging and it seems that he needs the operation soon.

You return home your anxiety growing knowing that your child's heart disease is taking a toll on his little body, a toll that he cannot afford for much longer. Then on the final visit before the visiting team is due to arrive, your doctor tells you that the team may not be coming as planned, their funding has been withdrawn by one of the donors. How can this be? You have waited for months, worked night and day to cover the additional costs that you child's heart defect has required. The Americans are rich, surely they can find the funds to make the trip. Your doctor explains that with the withdrawal of funds just 2 weeks before the trip has created a serious funding problem that most likely cannot be overcome in time to allow the team to arrive as planned.

Your hopes are crushed; your world is collapsing, what could drive someone to withdraw funding from such a wonderful cause? You ask your doctor if he knows what has happened, the answer is simply too much to believe! "The donor found out that the visiting team would be operating on children of other ethnicities, not just people like us." You are astonished, after all your country has been through, the war, the ethnic divisions, and the resolution of your problems, how can it be that Americans would withhold funding from any child in this country! Ah, well it seems the donor does not want them to operate on any child of any other ethnicity.

You leave his office, crushed, not knowing where to turn if indeed this team's trip is cancelled or postponed. Your child is growing worse every day, even a delay might prove fatal. One week later you receive a call from the doctor in the capital, those terrible words come across the phone, "the trip is cancelled" he tells you, "I am sorry". Ten days later, 3 days after you child was to have been operated on; you wake to find your child cold and lifeless in his bed.

This is a story, it is not fiction, it happens every day, and it has happened now. Our team was due to go to Sulaymaniyah in the Kurdistan region of Iraq. We had been contacted by a foundation several months ago telling us they had $17,000 to spend on having Iraqi children operated upon, it had been given specifically for Iraqi children by the donor.
When we contacted the donor directly we were told that those funds were only for Sunni and Shia children, not for Kurdish children and since we were going to Kurdistan then the funds were not available.

Bigotry and racism have no place in this world; these two together have killed millions over the last two decades. The children of Iraq with heart disease, whether Sunni, Shia or Kurd should not suffer the fate that this bigoted racist frame of mind is about to impose upon them.

Death is coming again to Iraq, this time the Four Horsemen of the Apocalypse are Bigotry, Racism, Misunderstanding and Vindictiveness.

Dr. William M. Novick
Founder and Medical Director
International Children's Heart Foundation