Marco’s Story

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A baby should not stop breathing during a cough and no one seemed to be listening to us.

Marco Papi and Marco before illnessOn April 24, 2012, my baby Marco Castulo Sena was born a healthy 8lbs. 1oz boy with no complications. He was beautiful and looked like a combination of my husband and me with his full head of hair and big brown eyes. Marco was greeted at home by his big brother, Peter, and sister, Mia. At around 4 ½ weeks old, Marco developed a slight cough and wasn’t eating as he normally did. Even though this didn’t seem too alarming, my husband and I decided to take him to the pediatrician. The doctor evaluated Marco and she diagnosed him as having bronchiolitis. Trusting in that diagnosis, we started Marco on nebulizer treatments for his cough and returned the next day for a lung check. Again, the pediatrician evaluated Marco and sent us home.

Marco before illnessTwo days later, Marco’s health just continued to get worse. His coughing episodes were coming closer together and more intense. We brought him back to the pediatrician a third time. She listened to Marco’s lungs and said they were “all clear” and that the illness would just take some time to go away. Another two days passed and Marco was barely drinking his bottle and couldn’t catch his breath during the coughing episodes. His lips would turn blue around the edges, so I knew (having had two other kids) this was not a normal cough or cold.

Marco in blanketMy husband and I both felt something was seriously wrong and we immediately took our baby to the Emergency Room at Virtua Hospital in Voorhees, NJ. The ER doctor listened to Marco’s lungs and once again said they are “all clear.” This time the doctor told us that Marco was suffering from dehydration due to the bronchiolitis but was fine to return home. The next day at home, Marco stopped breathing during a coughing episode. I was beginning to doubt all the doctors and was so scared for our baby. A baby should not stop breathing during a cough and no one seemed to be listening to us. We felt we were being labeled as overreactive parents. But I just wanted our son to get better.

We took Marco back to the ER the next day where a different ER doctor evaluated Marco and said he was fine and that he had “reactive airway disease” and sent us home again.

The next day, Marco stopped breathing several times. This
time, we went straight for what we hoped were the experts. We drove him as quick as we could to Children’s Hospital in Philadelphia where the ER staff admitted him immediately. They tested Marco for a variety of respiratory infections and his test results came back positive for PERTUSSIS (what most of us know as “whooping cough”).

We never imagined he was suffering from such a terrible disease! We had so many questions…HOW did this happen? WILL he be OK? WHAT will be done to help him get better? And all the doctors could say at this point was: “it all depends on Marco now.” “His body will have to fight and there is no guarantee he will survive, most babies his age do not”. He looked terrible. His little 5-week old body was trying to overcome these terrible breathing attacks while his heart rate and oxygen kept dropping to dangerously low levels. He looked weak and tired.

Marco’s little body was in critical condition at this point and the medical team transferred him to the Pediatric Intensive Care Unit (PICU) for close monitoring and treatment. They gave him antibiotics. But the medical team explained that this would not cure his disease but only prevent it from spreading to other people. It would not save his life.

Marco had to be on oxygen via nasal tubes and the nurses also performed CPAP (Continuous Positive Airway Pressure). This is when the nurse would run over and dial up an oxygen machine and then place a mask over Marco’s face so it could push the oxygen in his nose and mouth to help him breathe again because his blood was losing oxygen. In the PICU, he stopped breathing every 30 minutes during 24 hours!

By this time, Marco was on a feeding tube for nutrition and IV fluids to prevent total dehydration. My husband and I were in complete shock at how bad Marco’s condition had become. It seemed like more than one little body could ever bear. At one point, I even whispered to him that I would not be upset if he gave up so this torture would end.

Marco resting on ShoulderWe stayed the entire time with Marco in the PICU room despite doctors telling us to go home to get rest. Marco’s room was not designed for overnight stay; however, we pushed two cushions together and slept on the floor (not really sleeping though since Marco would cough constantly throughout the day and night). It was terrible watching him suffer and feeling so helpless. My husband took charge and would run to Marco and administer the CPAP when Marco would have a bad attack. The nurses were always there but every second mattered and we just wanted him to breathe again! I did not want to lose my son like this…to something preventable.

It wasn’t easy holding him. Really, we hardly got the opportunity to caress his little body since he had a feeding tube, oxygen tube, and IVs. We even had to wear masks the entire time we were near him. Our family members were discouraged from visiting us since Marco was considered to be contagious. It was heart breaking.

My baby stayed in that ICU unit for about the next four weeks, fighting for his life because of this terrible disease. As Marco’s health progressively got worse, we decided to contact the onsite priest to baptize him. It was the hardest decision ever. Our other two children had been healthy and vibrant during their Christenings. This time, it was not a celebration. No family came. It was tearful and depressing. Yet we felt the need to get him blessed in case he passed away.

Marco last day at hospital_board is empty_yayAs it turns out, our family is lucky. After almost four weeks, Marco gained enough strength to start breathing on his own. On day 24 of being in the hospital, Marco was discharged to go home. Marco was not 100% at this point, but doctors permitted him to go home to recover as long as we were comfortable with aiding him through the respiratory attacks which came less often. We still had to wear the masks at home in order to prevent Marco from getting any viruses/bacteria from us since his immune system was compromised. It was not a fun time and it took about two months after him being at home before the attacks finally stopped completely.

I’m hoping that Marco’s story will help save other babies’ lives. One of the reasons I wanted to tell my story is that my son was too young for his first immunizations (babies can only get the pertussis vaccine at 6-8 weeks old). That made him extra susceptible to catching this contagious disease which has been more widespread in our tri-state area.

 

Thankfully, Marco survived. However, had he been properly assessed and diagnosed, I feel certain his condition would not have to progressed to such an extreme. My message to parents of newborns: If your baby has a persistent cough, suspect whooping cough! Symptoms in very young babies can be vague. Ask the doctor to do the nasal swab test. Even better, now OB-GYNs also recommend every pregnant woman gets vaccinated with the pertussis vaccine (Tdap) to pass on immunity to her newborn. That one shot would have saved me and Marco so much horror. I hope this spares others what we went through.

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