Saeed's Story

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First time mother Ghezail was proud to find out that her first child would be a little boy. But her sense of wellbeing was disrupted when she received the results of her seven month ultrasound.  Her physicians told her that her baby had multiple birth defects with his heart and abdomen and there was an 80% chance he would not survive delivery.  They encouraged her to deliver him early to protect her own health because they thought he would die anyway. 

Undaunted by the news, Ghezail felt strongly that her boy would survive.  Her pregnancy continued in spite of her physician’s continuous efforts to convince her that her own life would be in danger if she were to deliver him at full term.  As a compromise, her physicians recommended sending her to London from her native country of United Arab Emirates. 

There they would have more experience dealing with similar complications.  Again, Ghezail refused, because in London they planned to operate on her baby immediately after delivery.  Something told her that they shouldn’t be too hasty in taking him to surgery so she refused the transfer and insisted on giving birth naturally when her baby was ready in spite of the risks.

On the 15th of November 2009, her water broke after 41 weeks of pregnancy.  Baby Saeed was born and he survived his first several days to the doctors’ surprise without incident.  Ghezail on the other hand, came dangerously close to losing her ability to have children after the delivery.  Surgeons were moments away from giving her a full hysterectomy to save her life. 

After the delivery, she’d lost so much blood that she stayed in the Intensive Care Unit for three days.  Her full recovery would take months.  While she recovered, her orders for Saeed were followed and he underwent surgery in Abu Dhabi to repair his abdomen when he was five days old.  For those first two months, Ghezail didn’t see her son.  She was recovering herself and didn’t want to hold him for fear that she couldn’t handle seeing her baby so sick. 

After almost four months in the hospital, they transferred him back to her local community hospital where he seemed to be doing well.  It wasn’t long before he started having more significant lung problems though, as his organs grew and his defects became more profound.  During that hospital stay, Baby Saeed stopped breathing for two full minutes and nurses told Ghezail that her baby was “in Allah’s hands.”  They intubated him and saved him that day but more ups and downs were to come. 

At eight months old, the Health Authority in the United Arab Emirates approved Saeed’s transfer to Germany with the hope that physicians there would be able to fix some of his defects.  But after nine hours in surgery, the surgeons came out of the operating news with the defeating news that they hadn’t been able to fix anything. 

With his liver and kidney failing,  Ghezail was furious, believing that the doctors had used her son as a subject to study instead of a patient to help.  Surgeons reiterated that Saeed’s heart and abdomen could not be repaired and Ghezail finally reached her point of desperation.  One of the Pediatricians gave her the name of her son’s rare disease - Pentalogy of Cantrell - and encouraged her to learn more about it.

That evening was a turning point that Ghezail would never forget.  She headed outside to be alone with her thoughts and saw, not too far away, three boys playing basketball, one of whom was playing from a wheelchair. 

At that moment she realized that all of her prayers and faith for the last months helped her believe that not only would Saeed survive, but that she would see him prosper. 

That day she resigned herself to the idea that she would accept him in a wheelchair, but she would not accept losing him.  Well educated and well-spoken, Ghezail remembers this as her moment of acceptance; when she fully understood their circumstances.

That night, she began researching the name of the disease she’d been given by the Pediatrician who’d challenged her to learn about it.  Her first Google search returned a story which changed her life and Saeed’s forever.

Halfway around the world, Ghezail knew this was a turning point.  She needed to get her son to Boston where he could be treated by surgeons who had seen these defects before.  That next day, Ghezail began her letter writing campaign, sending charts and reports to Dr. Jennings at Children’s Hospital Boston asking him to review them and to consider taking Saeed on as a patient.  His initial responses were guarded; he thought that everything that could be done had been done.  But Ghezail didn’t give up.  She implored Dr. Jennings not to give up on her son. 

He looked at the reports again, promising that he didn’t give up on anyone.  She sent him pictures and additional reports from the surgery that had been performed in Germany.  At last, Dr. Jennings and  the Cardiac surgeon, Dr. del Nido, conceded that there might be a chance that the defects could be repaired.  “The day I received the email that Dr. Jennings would accept my son as a patient was the most joyful I’d ever experienced.”  Re-energized, she and her husband petitioned her home country to approve the trip and worked on getting the necessary Visas.

Before long, they were at Children’s where a week’s worth of examinations and testing helped Dr. Jennings and his team develop a plan to repair half of Saeed’s abdomen, then his heart and then finish the other half of his abdomen.  Over the course of two months, Dr. Jennings, Dr. del Nido and the team performed five surgeries.  During the last surgery, Ghezail heard that Sarah Doyle, the mother who’d given Ghezail so much hope, was with her baby Aidan at Children’s that very same day.  That afternoon Ghezail had the chance to meet and thank them. 

Without Sarah sharing her story, Ghezail would never have known how to help her son.  She is thankful that her prayers for “Allah’s wishes, the surgeons’ excellent hands and Saeed’s strength” have been answered.  Today, Saeed is a beautiful, bright eyed, curly haired boy.  He’s a patient in the Pulmonary Rehabilitation program at Franciscan Hospital for Children, working to take the next step, being weaned off his ventilator. 

He’s responsive and active and working to catch up on the developmental milestones that his illness kept him from.  Ghezail delights in her baby boy and is proud that he recently passed his swallow test which means he can begin eating more food by mouth.  The joy of seeing Saeed do well is worth all the challenges, homesickness and sacrifices along the way.  With all the progress he’s made, she’s optimistic about both of their futures and the prospect of returning home with her son in the not too distant future.