By Alexandria Salahshour, CHOC parent and mom of Andre, four months
This story is about my son who got sick with Respiratory Syncytial Virus (RSV) at three weeks old and was hospitalized at six weeks. I’m sharing our story so other parents are aware of the dangers of RSV and know what to look for. It’s important to always follow your own instincts no matter what. YOU know what’s best for your child. You are your child’s voice.
What is RSV?
RSV is a highly dangerous respiratory infection. It can be a potentially deadly virus if not taken care of in time. Most children will catch RSV by their second birthday, but the younger they are, the worse it can be. RSV is primarily spread through child care centers and preschools due to being in close proximity to many children. For most children, RSV will cause nothing more than common cold-type symptoms, but for some children like my son Andre, it can lead to more serious life-threatening problems such as bronchiolitis, pneumonia, collapsed lungs, respiratory failure, airway inflammation and even death.
The early signs of RSV
This roller coaster started when Andre was three weeks old. Before Andre was born, I made everyone in my family get the whooping cough vaccine along with the flu shot if they planned on touching Andre. Paranoid? No. Proactive? Yes. When Andre came it was so exciting! It was the best day of our lives.
Though we allowed people to hold the baby, I would always say “Don’t forget to wash your hands first.” After Andre got sick, I realized that the REAL questions I should’ve been asking were “Are you sick? Have you recently had a cold? Are your children sick? Are people at your work sick? Are children you are around sick?”
When Andre got sick with RSV, it came as a shock. How did he get so sick so fast? I had a healthy pregnancy, and Andre was born healthy. At three weeks old, he became congested and his breathing sounded off. It wasn’t wheezing, but more like a grunting sound. The morning after he started showing symptoms, we brought him to his pediatrician. I brought recorded videos of Andre’s breathing so the doctor could hear the congestion and grunting.
Our pediatrician didn’t think there was anything going on. He advised us to run the humidifier and to use saline drops. He thought Andre would be just fine, but told us to come back if he got worse, or got a fever with wheezing. Andre never ran a fever. We did the saline drops and humidifier, but it didn’t seem to be getting any better.
That night after our first pediatrician appointment while Andre was sleeping, we had noticed that would choke on his phlegm, be uncomfortable and would occasionally stop breathing. We continued to follow our pediatrician’s recommendation of using the humidifier and saline drops, but it wasn’t helping. I knew that there was something more serious going on.
A few days later, Andre started to wheeze and have breathing problems in his sleep. We rushed him to the hospital where I had delivered him. It was scary to be there because we didn’t know what was wrong with our baby. I had never heard of RSV before, but when I researched his symptoms it kept coming up. The doctor tested Andre for RSV and it came back positive. We were discharged with the same instructions his pediatrician had given, and told to come back if it got worse.
A couple of days went by, and Andre wasn’t getting any better. We took him back to the pediatrician for an after-hours appointment. He was their first RSV patient of the season. The pediatrician let us know that RSV is like a roller coaster, especially in someone so young like Andre. We were once again told to use saline drops, a humidifier and aspirations, but Andre continued to get worse.
Caring for a sick baby during the holidays
At this point the holidays were right around the corner, and my family had arrived from Dubai. This vacation meant the world to me, but unfortunately, it was short-lived. As soon as my uncle held Andre for the first time, he could tell something was seriously wrong. He felt vibration sounds through Andre’s back, almost as if whatever he had was in his lungs.
Suddenly, Andre took a turn for the worse. He was starting to sleep a lot more and just seemed so “out of it.” We decided to take Andre back to the hospital. We took him to the closest hospital to where we were at the time. I told the nurse that Andre was diagnosed with RSV about a week ago, and we were told he would get better, but that he was getting worse. I told him that his retractions were so bad you could see his ribs, and that he was congested, looked like he couldn’t breathe, and had been choking on his phlegm. The doctor said he no longer had the virus and that he may have caught a different virus that was causing this to happen. Even though his retractions and wheezing were so bad, she didn’t see it as anything alarming. They did an X-ray to be sure to make sure it wasn’t pneumonia, and thank God it wasn’t
The next day I saw that Andre’s hands were pale and extremely clammy. Even his lips looked somewhat discolored. I didn’t want anyone to think I was crazy or a hypochondriac, especially because every time we went to the doctor for this virus, we were sent home and told it would get better.
The nightmare begins
Two days before Christmas, our nightmare really began. We woke up in the morning and it was as if Andre had somehow taken another turn for his worse. He seemed so out of it, wasn’t eating well, and had zero interest in breastfeeding. Andre stayed asleep a majority of the day, and didn’t have as many wet diapers as he normally did. By the end of the day he looked beyond lethargic, and almost lifeless.
I did more research about RSV and found that a baby should have 50-60 breaths per minute. Andre was only at 40 breaths per minute. We called the after-hours number for our pediatrician, which is initially probably what saved my son’s life. They immediately connected us with the on-call doctor: Dr. Barbara Petty, a CHOC pediatrician.
I didn’t know this pediatrician at the time, but I’ve told myself that one day I’ll make an appointment with her just to thank her. She got on the phone and was so kind and soft-spoken, she seemed so concerned and you could tell that she probably has the most incredible bed side manner. She was giving us the most information we have heard thus far. Luckily, while on the phone with Dr. Petty, she was able to listen to Andre, heard the way he sounded and listened to how much he was struggling.
She told us that we needed to get to the hospital right away. We let the doctor know that we’ve already gone to two different hospitals, and she told us that we should take him to CHOC at Mission Hospital. When we got off the phone with her we couldn’t thank her enough. That phone call will forever mean the world to me.
I remember it was raining that night. We quickly rushed out of the house and went to CHOC at Mission. It was a busy night in the emergency department and there were doctors and nurses everywhere. Our nurse checked Andre’s oxygen levels and found it was only at 70. A healthy, full-term baby’s level should be closer to 100!
The doctor came in looked at Andre and just kept saying everything was going to be alright and that they were going to take care of him. He told us that it was good we brought him in because his oxygen was so low. They gave Andre an IV, hooked him up to a heart monitor, and gave him oxygen. It was incredible how quickly a team can work to get a baby stable.
A diagnosis at last
He tested positive for RSV again, but he was also diagnosed with bronchiolitis, rhinovirus and respiratory failure. Finally, Andre was in a relaxing state hooked up to the monitors, oxygen, IV fluids and tons of steroids. When the doctor came in and let us know what was going on, he said that because Andre was so young he needed help breathing to fight off this virus. The doctor admitted Andre into the pediatric intensive care unit (PICU) so that they could keep a close watch on him. When we got into our room, three nurses immediately came in to help care for our baby boy.
Celebrating Christmas at CHOC
The next day was Christmas Eve, our first Christmas as a family, and we were still in the hospital. It was sad being in the PICU and seeing our son struggle in the state that he was in, but we knew Andre was in the BEST place he could be and getting the best care.
Thankfully, Christmas Eve was special at CHOC. A dog named Piper from their pet therapy program visited all the children. We woke up in the PICU on Christmas morning and there was a big bag full of presents for Andre. The tag read “To: Andre, From: Santa.” It was the kindest thing I’ve ever seen.
Though we were in the PICU, CHOC did an incredible job at making a not-so-normal Christmas feel normal. We were so thankful for CHOC and all of the wonderful donated presents from incredible people. Andre got so many toys for Christmas! Because of these kind people, this became a Christmas we will never forget and forever be SO thankful for. It still brings tears to my eyes every time I think about our experience at CHOC.
When the nurses came in on Christmas, they told us that Andre was doing better and we could start the process of slowly weaning him off the oxygen. His oxygen level was stable, his heart was stable and his retractions were better. It was so nice to see improvements on our little guy!
The next day he tolerated more weaning, and we got to leave the PICU for a room in the regular pediatrics unit. GREAT NEWS! He continued to improve as the days went by. A new doctor came in to give us a run down on what was going on and gave us so much helpful information.
He explained that this virus usually comes from day cares, preschools, and school-aged children and then it’s quickly passed on to others. He let us know that this virus is a roller coaster; it gets bad and then gets better, it gets bad and then it gets better. There’s really no way of telling you when the virus will expel from the baby’s body, especially when they are so young. The doctor told us because he’s so young, the virus can last in his system up to a month!
Bring our boy home
Andre was still doing great and had life back in him. He even smiled for the first time! It was so special and it was the sweetest smile I’ve ever seen. I’ll never forget it. His care team was continuing to wean him off oxygen.
As they got closer to letting him breathe on his own, I was so nervous since that would decide if we got to go home or not. The night went by and our little champion did amazing! I was scared to bring him home but the nurses and doctors knew best, and I knew I had to learn to trust their decision since they’re professionals Before we were discharged, the nurses came in and asked us if we had any questions. They let us know that if Andre started to decline, to come back right away. The hospital was great. They had an incredible staff and we were treated so well! When we left, they gave us a few extra pacifiers, a bunch of swaddles, a nice blanket with bears on it, and a pack of diapers. It was nice to have stuff to go home with in case we were out of anything.
Thankful for CHOC
I can never thank the staff at CHOC at Mission enough for taking care of Andre the way that they did. They made us feel like we were at home, even though we weren’t. Everyone was so comforting and understanding. If we ever have another emergency, which hopefully we will not, we’ll be returning to this hospital.
I hope that no one else’s child has to go through what our baby went through. But just in case, parents should know the symptoms of RSV, be prepared and trust your instincts.