Sorry, this post is not about places to visit in Lebanon, the beauty of Lebanon or about anything nice about our country. In fact, it is the exact opposite. It is about one of the many dark sides of our country. It is about something I do not wish to see happening even to my worst enemies.

As hard as it can be, and as hard as writing this post is, I feel it is very important to tell the story of our little angel…

Maria's story started in November 2016 and like every other couple, we were so excited and happy about the pregnancy.

Fast forward to March 2017 during a regular monthly doctor visit, our doctor spotted a problem with the heart of the fetus and recommended that we visit one of the best doctors in Lebanon who is specialized in “Pediatric Cardiology”. Our unborn child was diagnosed with congenital heart disease; she had a big hole in the heart and one of her aortas was smaller than the normal size. The doctor promised that everything could be fixed in a 2-stage surgery, the first one soon after birth to fix the aorta and the second - an open heart surgery - when the baby is stronger to fix the holes in the heart.

Needless to say it was a very hard time. We were living in anxiety but we planned for everything while we were waiting for the weeks and months to pass. We went to one of Lebanon's best hospitals, hosting a specialized team in congenital heart diseases, who were supposedly very professional. The hospital marketed itself as having all the needed and latest equipment as well as the most specialized personnel in Lebanon to perform such complex operations having saved more than 1200 children.

On July 24, 2017, my wife got a C-Section and Maria was born.

Maria, one day old

 

They performed the first surgery on day 3 and the primary results were reported as successful. The aorta problem for now should hold until Maria is old and strong enough to perform the second big surgery.

Maria 3 days old, angry before the surgery

 

On day 15, Maria was extubated (her oxygen tube was removed). We were so happy that we went and ordered the chocolate and made plans at home for Maria’s return.

Maria 15 days old, without the oxygen tube

 

On day 17, Maria was re-intubated because she was not getting enough oxygen. The doctor’s explanation: Maria is lazy and could not cough to remove the water in her lungs. She was infected from hospital bacteria; they gave her antibiotics and we waited another 9 days for her to become stronger.

On day 26, Maria was extubated and immediately re-intubated. After all the wait, they brought in another doctor to check her diaphragm for any signs of muscle problem that can prevent her from coughing properly. This eventually turned out to be negative or not of concern. So again, antibiotics and wait.

Finally, on day 33, they decided to perform a CT-Scan that would reveal why Maria is having all these problems. The primary result was that she has a severe infection and the in-depth more scary result was that “the left bronchus was squeezed between the pulmonary artery and the descending aorta”. This shocking result proved that there were complications after the surgery which the hospital staff did not consider the possibility of for 30 days. Oxygen could not pass properly to her left lung which made it so hard for her to throw the floods out through coughing.
So knowing these results, they decided to treat the infection first and then look into how to fix the bronchus problem.

On day 49, they decided to make another surgery to fix the problem created by the first one.

On day 50, I received a call that Maria is not doing well. The infection has spread from left lung to the right lung making her oxygen levels very low.

On day 51, we brought in a priest to baptize her.

On day 52, Maria became even worse, the doctor informed us that Maria is very bad. She said Maria is "Not Lucky", she suspected that Maria suffers from something called "Immunity Syndrome".

On day 52, 14 September 2017, 11:30 PM, Maria decided to leave to a better place…

We are in shock! No one can describe the pain and the emptiness that comes after.

So many questions left unanswered, many things made us doubt the hospital, the team and the whole operation…

  • Is it common to have such complications after a surgery of that kind? "The left bronchus was squeezed between the pulmonary artery and the descending aorta"
  • Why a CT-Scan was not performed earlier and immediately after the first extubation? Wouldn’t that have revealed the problem earlier and prevented further complications?
  • Why didn't an experienced team think outside the box to follow a protocol that clearly did not save Maria and can have the same result with a different baby in the future?
  • If Maria had immunity syndrome why did they only suspect this at the end? Why didn't they take a totally different approach while treating her?
  • Why wait so much between decisions? Is it to prolong her stay because every day in re-animation to bring the hospital a good amount of money?
  • Why did we at many times hear things like we are following protocol or we didn't think that this can happen,... Who should think about the consequences? Us or these professional doctors?
  • Why did she pass away on the same day we demanded the full report and noted that we want to get another doctor's consultation?
  • Why were we misled and were never communicated the possibility that Maria would not make it? They would always tell us that Maria is doing fine up until the last week.
  • Is it common for a doctor to go inside the children’s re-animation section in jeans and without a robe? The same jeans he wears outside while walking on the street? How many bacteria would that carry?
  • Why don't the nurses in the children's re-animation section wear anything on their heads? and is it common for a nurse to brush her hair inside?
  • Is it common to set the air condition on a very low temperature for babies who are only days old with lung infections? At times, the temperature was very low that even we feel the chill. The same low temperature that they would bathe her under at times. Wouldn't that negatively affect her immune system and make her feel so cold?
  • Why can nurses from different sections of the hospital come into the re-animation section as they please? Wouldn’t that bring more bacteria or whatever was outside?
  • Why do the cleaning staff use the same tools to clean the re-animation section and the different sections of the hospital?
  • Why is the baby left alone in re-animation? Especially at night… In more advanced countries, they let the mother stay with her baby at all times or at least they would record the mother’s heartbeat as that would make the baby feel calm and secure eventually becoming more willing to fight for survival.
  • Why didn’t we receive a 'sorry' call from the hospital? Afterall Maria was born and never left the walls of that hospital. The only thing we received from the hospital was Maria’s body and a $47,500 bill that was thankfully paid between Daman and insurance. Nobody called us, nothing, as if Maria never existed to them.
  • This is far-fetched, but in such situations, usually parents are offered therapist help or advices from the hospital on how to go on.

We know that anybody can make mistakes but professional people should not make simple mistakes. We know that Maria could have passed away anyway but why would they leave room for us to question them and all their decisions? Did they really try to treat her or did they just prolong her survival to get more money?

You think that you are strong. You think that she is an angel, she is in a better place now. You think that this saved her from a second or third surgery, from a difficult life after; but you cannot remove these thoughts from your head… What if she lived, how would she have looked when her hair grew, what word would she have said first. Mama, baba or teta?  This is like a very bad dream that you can never wake up from…

During these 52 days, Maria was interacting with us, she looked at us, she was angry sometimes, she smiled during others, she had nice dreams were she smiled during her sleep, she felt pain, she felt cold, she had lonely long nights…

I have written all of the above to open the eyes on what’s happening in Lebanon’s best hospitals, to get the advice of experienced people if possible and most importantly to make people aware of what happens, to inspire the doctors to work better in such situations, avoid the same complications and eventually save more babies.

We have always believed that Maria will make it...
Now, I only ask her to look at us from above and forgive us for blindly trusting this team of doctors, we should have checked with as much doctors as we can in every step of the way. Maria my child, forgive us for not trying to find better solutions sooner, forgive us for not spending more time with you...

Click here to download Maria's full medical report in French. 

Maria smiling in her sleep

 

Maria video, she's curious about her surrounding

Maria 2 days before passing to heaven
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