Even after six miscarriages, Gladys Salazar and Paul Gomez kept hoping and believing that they would be blessed with a baby. At long last, the dream came true—twice—with the births of Bethany and then Tiffany. “Two miracle babies,” says Gladys.
Bethany has been battling several rare metabolic and mitochondrial disorders since birth, and Gladys and Paul are grateful for the care she receives at CHOC Children’s. Tiffany was cared for at CHOC as well. Unfortunately, her life was cut short by brain cancer. Still, her parents are grateful for the doctors who extended Tiffany’s life and all of the compassionate people at CHOC who supported them through a painful experience.
Tiffany was initially treated at another hospital, but her tumor didn’t respond to treatment. When it appeared that Tiffany was out of options, Gladys and Paul decided to “focus on making memories with her.” Through the Make-A-Wish Foundation, the family enjoyed outings to Knott’s Berry Farm and Disneyland.
On one of those outings, Tiffany’s color changed, she couldn’t hold anything down and had trouble breathing. An ambulance was called, and when it arrived Gladys went with her instincts and instructed the driver to take them to CHOC. “We made up our minds to let God do what needs to be done,” says Gladys.
At CHOC, Tiffany was examined by pediatric neurosurgeon Dr. Joffre Olaya, who determined that the tumor was growing and causing pressure. He recommended surgery to debulk the tumor. “I was crying,” recalls Gladys, “because I didn’t think it was an option. He said there were risks but that it could be done. The other hospital told us it was out of the picture.”
The difficult operation took five and a half hours. “Dr. Olaya told me he really had to fight to keep my daughter alive,” says Gladys. “He did an amazing job.”
Tiffany spent about a month recuperating in the pediatric intensive care unit (PICU). She spent four days with heightened breathing. “One of the doctors watched her breathe and said she was a real fighter; strongest diaphragm he’d ever seen,” says Gladys.
Sadly, however, complications developed. “Tiffany was in pain, and couldn’t tell us,” Gladys says. “We met with the palliative care team and decided to take her home. We got to celebrate her third birthday with a fiesta. There were Mariachis and the whole thing. We told everyone, ‘Come celebrate the lives of our daughters.’ We also participated in the CHOC Walk in the Park to help CHOC Children’s. We are so thankful that we got to spend six more months with our little Tiffers. It was all thanks to Dr. Olaya, thanks to CHOC, and thanks to God who brought us here.”
Tiffany was admitted to CHOC one last time, where she passed away peacefully. “But it was hard. After six miscarriages, you think, now this, too?” says Gladys. “But Paul said, ‘God gave us our daughters; we can’t be disappointed.’”
“Tiffany was an angel; she brought joy to countless people. I’m so glad we got the opportunity to meet her. She changed me in many ways. Cancer makes you see things differently. Tiffany’s in good hands now; she’s not hurting anymore.”
Gladys thinks of the team at CHOC as family. “We’ve been to a few hospitals before and there’s no comparison to CHOC,” she says. “Just the love and compassion they show towards the
patients. The doctors, the nurses, the social workers, the chaplain…they all care for you so much. Even the people who do the cleaning, and security—everyone is so polite. There was one nurse who was a mom and grandma, and she was so comforting―she felt like a mother to me. For her, it isn’t just a job, she totally loves what she does. Another nurse, near the end, put a little beanie on Tiffany’s head to help keep her warm. I was so touched by her kindness. I am really grateful for coming here.”
The Gomez family continues to rely on CHOC—Bethany has been hospitalized twice since Tiffany passed away. “One doctor said to me, ‘I’m sorry to you have to go through this now,’” said Gladys. “It was so touching. They know us very well; not like a number, like family.”
When Rayaan was 16 months old, he caught a simple cold. He had a typical low-grade fever and slept more than normal. I figured he needed the rest and would feel better the next day. The next morning, he was having a difficult time waking up so I thought I should take him to his pediatrician. She recognized something was very wrong and described him as being “unresponsive.” He was immediately transported to CHOC Children’s via ambulance. CHOC’s emergency department team was waiting for our ambulance and ready to care for Rayaan as soon as we arrived. They quickly assessed him and then placed him on a ventilator as he was brought up to the pediatric intensive care unit (PICU).
His care team ordered an MRI of his brain and diagnosed him with Acute Disseminated Encephalomyelitis, also known as ADEM. This means there was widespread inflammation in his brain and spinal cord that damages the myelin, which is a protective covering for nerve fibers. ADEM had affected over two thirds of his brain. We didn’t know it yet, but we would be at CHOC for the long haul.
Over the course of the next six weeks, Rayaan received multiple types of treatment for ADEM. His care team was vast, and included many different specialties: Dr. Nguyen Pham, a pediatric otolaryngologist (ear, nose and throat specialist or ENT), Dr. Gregory Wong, a pediatric gastroenterologist, Dr. Sharief Taraman, a pediatric neurologist, in addition to infectious disease specialists, in-patient physical and occupational therapists, a respiratory therapist, and the feeding team. He was in a coma and on life support for three weeks. During this time, his doctors kept a very close eye not only on him, but also on our entire family. Dr. Nick Anas, CHOC’s physician-in-chief; Dr. Jason Knight, medical director of emergency transport services; Dr. Paul Lubinsky, associate PICU director; and critical care specialists Dr. Juliette Hunt, Dr. Anthony Cherin and all of our nurses became family to us. I remember when Dr. Anas came to check up on Rayaan and he asked me when was the last time I layed next to Rayaan, I replied it’s been a while, and he ordered the PICU staff to transfer Rayaan from a crib to a full-size bed immediately, so I could lay next to my son. Rayaan was connected to every machine and monitor you can imagine, but his doctor was keeping my feelings in mind.
During this extremely difficult time when we were waiting for him to wake up, we were fortunate to have a wonderful support system. The Ronald McDonald Family Room let us escape for a few minutes, occaisionaly breakfast and lunch was provided by generous donors, and my daughter who was only three years old at the time was taken care of by child life specialists, while a social worker and case manager were assigned to us to provide us with counseling. This period was the hardest thing we had ever dealt with in our lives.
After three weeks of being in a coma, Rayaan began showing signs of waking up. He began by slightly moving his hands and arms. A few days later, we noticed his eye partially open. It would take him almost two weeks to be fully awake. Although he had woken up from his coma, his journey was just beginning. The inflammation in his brain caused severe brain trauma and he lost his speech, and his ability to walk, eat, swallow and drink. While he was still in the hospital, a feeding tube was placed, as his oral muscles were to weak to swallow and chew. After his discharge, the rehabilitation team came in to ensure he would relearn the basics. Nicole Well, a speech language pathologist at CHOC, taught my son how to talk again. A feeding therapist named Polly provided electrical stimulation feeding therapy to make his muscles strong enough again to be able to eat, drink and swallow on his own.
Rayaan endured several surgeries and procedures during his hospitalization, and even more after his discharge and as well as multiple visits to the emergency department at CHOC. The CHOC specialists always worked so hard on Rayaan as if he were their own child. I am very grateful to CHOC for saving his life and I know that the comprehensive care we received at CHOC we wouldn’t have been able to get anywhere else.
Today, four years later, Rayaan is in Transitional Kindergarten and still undergoes multiple therapies in the effort to make a full recovery from his illness. He remains under the care of CHOC specialists. I am inspired every day by his strength and his courage to overcome so much at such a young age. Above all, our family is grateful for CHOC, who has provided him with the comprehensive medical care throughout his journey.
The first time Chaplain Steve came to CHOC Children’s, he had just found out his daughter Catie needed an emergency neurosurgery. Now, he’s back for good― as the newest chaplain on CHOC’s spiritual care team.
Ever since pre-school, Catie had experienced difficulties with body awareness, some motor skills, coordination, attentiveness in school and other challenges that didn’t seem to fit her developmental stage.
For five years, Steve and his wife Claudia explored everything: psychiatry, ophthalmology, behavior modification, medication, coaching, neurofeedback and more. Finally, when she was 8 years old they advocated for a referral to a pediatric neurologist, rule out the possibility that there was something wrong with her brain. Even though Catie didn’t show any of the physical symptoms typically associated with a mass in her brain, such as headaches, seizures, fainting or major motor problems, their neurologist ordered an MRI just to be safe.
After five years of trying new therapies and hitting dead ends, Steve and Claudia didn’t know what to expect from Catie’s MRI results, or if they were finally about to get answers.
Catie’s scans revealed that she had a large arachnoid cyst in her brain. The fluid-filled sac measured 10 centimeters, about the size of a baseball.
“I was in shock” Steve says of the moment his wife called him with the results. “I remember exactly where I was and exactly what I was doing at that time. I remember begging my wife, “Please tell me you’re kidding. Please tell me you’re kidding.”
“He told us that this was serious, but that they were going to take care of it right away,” Steve recalls. “He explained very clearly what he was going to do to drain the cyst and how he was going to do it.”
Steve and Claudia didn’t understand how a cyst could have been growing for years inside her skull undetected.
“Although Catie hadn’t yet shown physical side effects, she inevitably would have begun to decompensate, which would’ve greatly increased her risk of injury,” said Dr. Loudon.
Since Catie is the oldest child in her family and the first to undergo a major surgery, her parents were naturally worried, about everything from anesthesia to recovery
“Dr. Loudon told us that he would care for our daughter as if she were his own child,” Steve says. “Since working at CHOC, I’ve heard him tell other families in the emergency department the same thing. I know that he means it every time.”
Dr. Loudon performed a series of surgeries to open the cyst and allow it to drain internally, a procedure known as endoscopic cyst fenestration. He made a small cut in her skull and then punctured a tiny hole on either side of the cyst to allow the fluid to drain internally over a period of time.
Dr. Loudon’s commitment to Catie’s safety was deeply appreciated by her parents.
“I saw the way his team acted, and how they interacted with my daughter,” Steve recalls. “Dr. Loudon takes his job very seriously and he goes after the problem. We knew she was in good hands.”
With every hospital stay, Steve found that his own natural instinct was to offer support to other parents, whether it be in the waiting room or the pediatric intensive care unit (PICU). By this point, Steve had been a chaplain in a hospice setting for six years.
“Even while we were the ones receiving care, my first reaction was always to rush to other families in need, but since I was there as a parent, there was only so much I could do,” he says.
Now that Chaplain Steve has officially joined the spiritual care team at CHOC, he is able to offer spiritual and emotional support to patients and families.
“I have my own beliefs and faith traditions, but these come secondary to what a family needs in a time of crisis,” Steve says.
Today, Catie is a high school student who loves science, space and kids. She hasn’t been hospitalized since her last surgery, although a few years ago she came back to CHOC with a broken foot that she got “pretending to be a ninja,” as her dad says. She still treasures the Choco bear that she received when she was a patient, but sometimes loans him to her little brother if he’s feeling under the weather.
We participate in CHOC Walk in the Park in honor of our son, Jaxson, who died in 2012 at 4-years-old following a drowning accident at a neighbor’s pool party. Jax was transferred to CHOC Children’s Hospital from another hospital, and the CHOC staff spent the next three hours doing everything they could to save our boy. The grace, compassion and solace that the CHOC staff showed us left an overwhelming mark on my wife and I. We lost our boy, but it was if they lost him with us.
We walk in Jax’s memory. It’s a way to honor his life and the way he touched so many people in his short time with us, all the while helping to raise money for the hospital. We first started walking in 2012, just a few months after Jax passed away. A friend of mine worked at Disneyland and had worked on the event before, and mentioned it to me. I don’t think we signed up until about six weeks before the event, and we just figured our family and maybe a handful of friends would join us. We ended up with over 75 team members and raised more than $10,000.
I’ll always remember that first year. There were so many emotions – we were in the thick of grieving, the rush of scrambling to get a team together in such a short time – but we felt a sense of pride on how we honored our sweet boy.
We are most inspired by the compassion and grace that the CHOC staff showed to our family. That is what we will always remember.
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 Children’s 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 Children’s 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 Children’s.
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.
Want important health tips sent straight to your inbox?