My baby is sick
Baby Malick and her mom in the guesthouse in Ancona, Italy.Courtesy of SariaIn October 2018 my youngest son, Serigne Malick Seck, who was just about 9 months old at that time, was diagnosed with a heart malformation. Hearing the dreaded news felt like a huge blow to the chest that left my heart thumping long after the doctor had pronounced the word “heart.” I hardly can remember the other words that followed. I vaguely heard him say some other words like “condition”and “surgery.”
After a huge effort to calm down, so as to get the full meaning of his explanations, I started asking questions to better understand my son’s disease.
The doctor sighed and took a paper and a pen. He sketched a heart on the paper and started explaining: “Imagine this is the heart of your son, the lower part does not communicate correctly with the upper part," he said, drawing an arrow from the bottom to the top. There is a hole in between and the quantity of blood that goes through this hole to the upper part is too much. If we don’t do anything this hole will keep widening until surgery becomes impossible.” The doctor said all this in a very simple but professional and pedagogical way.
There it was: a hole in the heart. From that very minute my thoughts raced wild in my head.
Baby Malick and her momCourtesy of Cheikh Darou SeckI first noticed the heart problem of baby Malick when I took him in my hands for the first time. As I was holding him I could feel the fast heartbeat against my palm. Immediately I could feel something was not normal with the rhythm. The heart beat far too fast. I showed it to my mom but she said there was nothing wrong with the baby and that even though the heart appeared to beat faster than usual, things would eventually get back to normal as baby Malick grew up. At that time we did not know yet that this was going to impede his growth.
We left it at that. Still I was not comfortable with the idea of things getting back to normal as the baby grew up. When he was about six months a pediatric nurse came to my house and immediately wanted to take him in her hands. At that time baby Malick was so beautiful that people would like him at first glance. Especially the women friends of his mother. They would always hold him saying: “Khady, your son is too beautiful. He’s got such gorgeous looks!”
Then this pediatric nurse took baby Malick in her hands and asked to see me. She told me that there could be something wrong with the baby. She looked at his brow and said in a serious voice: "You can see that his brow is covered with sweat. Usually this is a sign of heart problem. Does he sweat when he takes the breath? Khady, the mother of baby Malick, said yes. Then you need to take him to the pediatric center of Dakar for a thorough checkup. This may be serious. I once had a case like this with a newborn and it appeared to be a heart problem.
We (my wife Khady and I) took this advice seriously.
A few days later we took baby Malick to the Albert Royer pediatric centre of Dakar. After some medical checkups and heart echograph, we were referred to the pediatric heart disease center called CUOMO. It is a center specializing in children’s heart disease. After another series of medical checkups, chest X-rays and two other echographs they declared that he needed surgery.
In Africa. Here more than anywhere else, needing surgery for a baby is a serious problem. I could not help asking all these questions to myself: What if the surgeons are not qualified enough? What if they don’t have the required equipment? What if the surgery is too expensive?
Too many questions but not a single answer. Through all this anxiety and stress I did not want my wife to know that the case was serious. I did not know how she would take it. All the way back home (from the hospital) I strained my mind to find the best way to tell her. How can you tell a mother her newborn baby needed not a simple surgery but a heart surgery? That seemed beyond my strength. I was even more depressed than my wife. Yet there was this inner voice that was telling me that she had the right to know. Simple plain truth. “Just tell her the simple plain truth," I told myself. I think the reason I did not want to tell her the whole truth is that I would not be able to bear her suffering and frustration and that she would inevitably cry. Yet, against all odds, she appeared calm and accepting when I told her that baby Malick was probably going to have heart surgery. Then she asked the question that I was expecting: “How will he bear the surgery? He’s so small.” I had no answer to that.
The doctor prescribed some medicine to be renewed for the next three months. What did that mean? Baby Malick’s condition was very serious and they were talking about three months. I wanted and dreaded the surgery at the same time. I wanted baby Malick to recover, but I also was scared he might not... you know? All of these thoughts rushed to my mind in such a disorder that I had frequent headaches. So many questions that could not be answered. And yet in the midst of it all there were important decisions to be made.
Part of me was against having the surgery in Africa, and the other part didn’t even want the surgery in the first place. Gosh, this was so hard and so sudden. This is the kind of thing that hit you at once, and by the time reality sinks home, you are totally and helplessly overwhelmed. Then you find yourself delaying the mere fact of thinking of the case.
Sometimes in the middle of the night, baby Malick is woken up by a fit of coughing and cannot sleep for the next couple of hours. When that happens, he has a fever and you can feel his heart thumping hard and fast against his ribcage. He does not cry at all but utters continuous deep sighs that tears my heart. After a time that seems impossibly long he limply falls asleep completely worn out by the pain, but you still can see the efforts he makes to breathe normally. I have always wondered why he never cries in time of crisis, and I found out that the pain in his chest must be so overwhelming that even uttering cries becomes something he physically cannot do.
“After thirteen months, baby Malick still cannot crawl."
Baby Malick on his arrival in ItalyCourtesy of Federica IEZZII can't help remembering the words of the pediatrician: "This is a serious thing that will certainly impede his normal growth.” Baby Malick is now thirteen months old and still does not crawl, let alone walk. Yet he sometimes wants people to hold him up by the hands so he can put one step after the other, just like babies learn to do after crawling for some time. I am hopeful he will walk one day. This is another question I cannot answer. The other one that I am tense about is the surgery and its outcome. But... I cannot talk about that for now. I just can’t. I remember once, Mously, one of my daughters, was having her two front teeth removed by a dentist as a result of her falling down on the stairs. When the dentist started to work on her after anesthesia, my heart sank and I felt so weak that I was certain I would hit the floor if I did not leave the room. I had never experienced any feeling like that. I just could not stand seeing the dentist, my best friend, work on my daughter. This was the second time. I think some parents know what I am trying to explain here. In my Wolof mother tongue we call it “hollu njourel," which means in literal translation “parenthood heart.” Every time I think about baby Malick and surgery, that feeling of helplessness makes my heart miss a beat. What is a parent supposed to do in situations like these? How can we deal with the suffering of a thirteen-month-old baby who even can't talk, to tell you what is ailing him? Then the other thought is you cannot believe this is happening to you. And as a parent you are supposed to find a solution to your children’s problems. You have this responsibility towards your offspring. Knowing that is common with all people, but facing it is another problem.
Federica and the One Life Onlus Organization
Friendship is a door open to all kinds of possibilities. Everything started with the outreach of my Friend Jeanne Meyers to her friends Jessica and Sharon, who in turn reached out to Federica IEZZI, a heart surgery specialist in Italy. She agreed to organize the trip of baby Malick to Italy for surgery. Which was unbelievably kind of her.
Sharon and Jessica have been real heroes working silently behind the scenes to make things and people come together and produce the expected results, and I would like to acknowledge their dedication, empathy and generosity in the case of baby Malick. It is only in cases like this that one can truly value the power of humanity and hope in the world. Sharon and Jessica, with all my heart, thank you!
The humanitarian corridor that was going to save the life of baby Malick had just been opened. Federica, the heart disease expert from Italy and founder of One Life Onlus Organization offered to organize the trip of baby Malick to Italy for surgery. Just like that. I will skip the details of the trip preparation. Federica and her organization took care of every detail at the Italian embassy in Dakar for visa delivery. Then on June 24, baby Malick and her mother left Dakar to join the Riuniti Pediatric University Hospital of Ancona, in Italy.
Baby Malick the day he got discharged from hospitalCourtesy of Federica IEZZIThe trip to Italy went smoothly, and they were immediately taken to the Riuniti hospital by some members of Frederica's team. They got there after a night trip that covered 303 kilometers. The night of their arrival, a nurse named Annarita was on shift, and she immediately fell in love with baby Malick. She was to play a great role in the life of baby Malick in Italy.
That morning I woke, and the first thought that came to my mind was: They will operate my baby today. Then the waiting started. Federica had told me that she would keep me informed at every step of the whole operation. But there was this feeling of anxiety and restlessness in me. I could not concentrate on anything. I remember that at some point I tried to grade some preps, but I eventually dropped it and went out to walk on the terrace to change my ideas. But that day even walking had become a problem, as I continuously checked the hour and WhatsApp to see if Federica had sent the expected message. In the end, overcome with anxiety, I simply lied down, utterly powerless.
Then at some point I checked my WhatsApp account and the message of Federica was there: “Malick is fine! The operation perfect. Not any kind of problems!! Everything OK. Now he will go in intensive care unit until tomorrow morning.” She also told me that the operation lasted four hours. Then I was relieved and I could breathe again. As promised Federica kept me informed of every detail of the operation and the condition of baby Malick. This helped me discover the generous nature of Federica IEZZI and her true love of human beings. She patiently explained everything to me, and as my wife speaks no Italian or English, Federica communicated with her through me. Whenever she needed to explain something to my wife she would reach out to me, which was very demanding on her as she really had no time.
When baby Malick got discharged from the hospital a week after, she sent me the discharge report, and all the professionalism of the hospital medical staff could be felt in that report. This made me marvel at the angel hero nature of Federica IEZZI and the members of her team: a group of volunteers dedicated to helping humanity.
Life in the guesthouse
Federica IEZZI, baby Malick and his momCourtesy of FedericaAfter being discharged, baby Malick and her mom joined the guesthouse of the group, where they have been staying ever since. The whole thing went smooth and baby Malick is recovering in the guesthouse, where everything is provided to him and his mother as courtesy of the humanitarian group. Members of the group like Annarita, a nurse, Saria, Patricia, Alexa and others make it a point to visit them every day. They are so caring that I can’t help marveling at their generosity and love of baby Malick. My wife always says that the members of the group love baby Malick better than us, his parents. Every time they come to the guesthouse, they play with baby Malick and they cheer him up. No matter how busy they are, they will stay and play with him for a while before leaving. So far they have brought him so many toys that he plays all the time with different toys. From the echoes that I have, Malick has become a true star in there. During controls the presence of baby Malick never goes unnoticed. The nurses, the doctors, everybody wants to play with baby Malick. Life in the guesthouse is simply wonderful. They even provided my wife with a smartphone so she can communicate with her family back home via WhatsApp. There is no word powerful enough to describe the generosity of Federica and her group.
Baby Malick, his mom and AnnaritaCourtesy of Federica IEZZIControls are an important part of the post-surgery process. So far baby Malick has done one control and his heart appeared to be ok. The next control is scheduled for August 12. Yet this whole thing appeared to be simply wonderful. The organization created by Federica IEZZI is a life-saving organization dedicated to saving lives around the globe. I cannot help thinking that Federica and her team are amazing angels that have given to my son a unique and priceless opportunity to recover from a disease that otherwise could have had dreadful consequences. Thank you Federica IEZZI. Thank you One Life Onlus! Thank you MY HERO!