Tuesday, October 21st, 2014
This guest post is by Emily Joyner, a mom of a baby who had a terrifying bout with RSV, a potentially serious respiratory virus that can lead to pneumonia, particularly in babies. Though RSV’s typical “season” starts in November and runs through April, it can strike at any time of year. My younger daughter was diagnosed in early September (2008) when she was less than a week old, and was hospitalized for 3 days–but that was nothing compared to what Emily’s son, Hayden, experienced.
I’ll never know if his coos and babbles sound raspy because he spent two weeks on a ventilator, or if that’s just his normal voice.
I’ll never know what would have happened if we had gotten to the ER just minutes later than we did.
I’ll never know how he was exposed to the germs that caused him to get so sick, so quickly.
But I do know how frighteningly severe respiratory syncytial virus (RSV) can be, and I have learned more than I ever thought possible about the respiratory system. Spending hours upon hours staring at monitors and waiting on test results, CO2 levels, and blood work reports can feel like a crash course in medical school.
In January, when my son, Hayden, was just 4 weeks old, he woke up one morning with a bit of a runny nose. Since he was my third child, I’d had many experiences with sneezes and sniffles, so a clear, runny nose didn’t faze me in the least.
Throughout the day, there were no other issues, no worrisome symptoms—nothing out of the ordinary. Then the following day, Hayden began to seem irritable and slowly cut down on feedings. I knew I was going straight to our doctor’s office first thing the next morning, a decision that was confirmed when he woke up with a fever.
Our wonderful pediatrician could hear some congestion in his lungs, and she suspected bronchiolitis. She sent us to the ER and prepared us for the tests they’d run because of his fever, but I don’t think she even could have imagined what would happen next.
When we walked in the ER of Le Bonheur Children’s Hospital, we were taken straight back to a room for a nurse to check Hayden out. Within a matter of minutes, his oxygen saturation was dropping into the 70s, and our room was filled with nurses. Things had gone from worrisome to terrifying in what felt like seconds. My 4-week-old son was in respiratory failure, but at this point we didn’t know why.
Once he was somewhat stabilized and on the support of high-flow oxygen, Hayden was moved to the Pediatric Intensive Care Unit (PICU), where we began the agonizing wait. Waiting to hear what was causing his breathing difficulties, waiting to hear whether or not he would be intubated, waiting to see if he would make it through the night.
In time, we received answers. RSV—a common cold to older children and adults—was the culprit trying to take the life of my baby. I was shocked. I had heard of RSV, but I never knew it could be life-threatening to a full-term, healthy baby.
In that time, we did all we could do—pray and wait. Before long we learned Hayden would need the support of a ventilator, which he required for a full two weeks. There is nothing that can prepare a parent for the sight of their precious, perfect tiny baby relying on a machine for every breath.
In total, we spent 21 days in the hospital, and during that time I paid attention to every number, inquired about every test, and talked through every decision with the medical staff and my husband.
When Hayden was discharged on February 9, we were very aware of the fact that we were still in the midst of RSV season, so he spent the next few months hidden away at home in an attempt to keep him well, because we had no way of knowing how even the smallest cold could affect him.
When the summer rolled around, I felt a huge relief, like a weight had been lifted. I felt like we were home free and could let down our guard, because we could finally go out and about as a family of five.
However, what I didn’t expect was the sense of dread that would come as we approach yet another RSV season. I’m thankful that Hayden has been doing so well for these months, but when RSV seasons starts again, he’ll still be a baby, not even a year old yet. Although he’s older, bigger and stronger now–as you can see from the photo below–I know I’ll still panic with every sniffle and cough, something that wouldn’t make me bat an eye last year.
Like any parent who has experienced a child’s major medical crisis, I can already tell I’m forever changed. I’m determined to do everything in my power to keep my son healthy, and to educate others on the dangers of RSV.
Hospital photo courtesy of Le Bonheur Children’s Hospital
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Wednesday, October 8th, 2014
I’ll cut to the chase: It’s putting their baby to sleep on their stomach. In a safe-sleep survey our sister publication, American Baby, conducted with Safe Kids Worldwide, nearly a third of moms admitted that despite knowing that babies should only be put to sleep on their back, they haven’t always done it. What’s more, nearly half of those moms had put their baby on their stomach before they turned 3 months old–when the risk for SIDS is highest.
This fact stands out as we join with the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD) to commemorate the 20th anniversary of the Safe to Sleep (formerly Back to Sleep) Campaign. This campaign, reminding parents and caregivers everywhere that the safest way for a baby to sleep is on her back, has been enormously effective. As we reported in a story on safe sleep last year: Within ten years, back-sleeping rates escalated and SIDS deaths dropped by more than half. “It was one of the greatest public-health-education triumphs of the late-20th century,” says neonatologist Michael Goodstein, M.D., a member of the American Academy of Pediatrics (AAP) Task Force on Sudden Infant Death Syndrome. “An estimated 30,000 children are alive today because of Back to Sleep.”
Still, there’s plenty of work to be done, and our friends at Safe to Sleep know that better than anyone. They regularly produce materials to help spread the message of safe-sleep practices and why they’re so crucial. Their site is the perfect place to turn for informative photos of exactly what a safe sleep environment looks like, as well as ways to reduce the risk of SIDS and other sleep-related deaths. There’s also a helpful page busting all the SIDS-related myths, including that back-sleeping can lead a baby to choke on spitup or vomit–which, as hard as it may seem to believe, just is not the case. The head of Safe to Sleep, Shavon Artis, Dr.P.H., M.P.H., wrote a helpful article for us about how new moms feel about safe-sleep rules. See if you can relate to their experiences.
Since this is SIDS Awareness Month, it’s the perfect time to take stock of how well you stick to the safe-sleep guidelines:
- Always put your baby to sleep on his back.
- Don’t put blankets or toys in her crib.
- Use a pacifier at sleep time.
- Don’t smoke while pregnant, and don’t allow anyone to smoke around your infant.
- Don’t share your bed with your baby.
- Make sure the crib mattress is firm and tight-fitting.
- Don’t overdress your child or put his crib near a heat source.
You might want to send this video, courtesy of NICHD, to any expecting moms or caregivers who might need a refresher course:
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Monday, September 29th, 2014
This is a guest post from Allison Laypath, a writer and cancer mom who lives with her husband and two children near Salt Lake City, Utah. She writes the blog Living With Burkitt’s, which documents her son’s battle with cancer. She is also the founder and co-writer of the family travel blog Tips for Family Trips.
How would your family like to visit a place that celebrates Christmas and Halloween every week? Would you like ice cream sundaes with extra whipped cream for breakfast? What about VIP passes to Walt Disney World and Universal Orlando Resort? What if all of this cost you nothing?
For children with life-threatening illnesses and their families, Give Kids the World Village in Kissimmee, Florida, makes this dream vacation a reality. Every year, more than 7,000 children visit Walt Disney World and other Orlando attractions with their families through Make-A-Wish or other organizations. Give Kids the World hosts nearly all of them.
Make-A-Wish partners with Give Kids the World to provide lodging, transportation, meals, theme-park tickets, gifts, on-site entertainment, and ice cream for breakfast (!) at no cost to the wish family. Wish families choose their travel dates and Make-A-Wish works with Give Kids the World to plan the rest.
In 2013, my family had the opportunity to spend a week at Give Kids the World after my 6-year-old son Andrew completed treatment for Burkitt’s Lymphoma, a rare and aggressive cancer. A year earlier, he had been a healthy boy, excited to start kindergarten. In November 2012, he collapsed at school with stomach pain that led to two surgeries, weeks in the hospital, and the diagnosis that every parent dreads.
Cancer was life-altering for our whole family. I dropped everything to be a full-time cancer mom, my husband struggled to focus at work, and our then 8-year-old daughter Madeline often felt forgotten during six months of intense chemotherapy and frequent hospital stays. When Make-A-Wish granted Andrew’s wish to go to Disney World, it was a victory celebration for all of us.
At Give Kids the World, gifts for both Andrew and Madeline were delivered daily to our private two-bedroom villa. (That’s our villa in the photo, where the cheerful sign was just one of many ways we felt welcomed.) We often left Disney World early so we wouldn’t miss celebrity meet-and-greets by the pool, photo ops with Mickey Mouse, pony rides, or a life-sized game of Candy Land. Everything at Give Kids the World–from the playground to the pool–was built to accommodate wheelchairs and other special needs.
The best part about Give Kids the World was that everyone there understood what we had been through and they celebrated with us. Every family at Give Kids the World has a child with cancer, heart disease, or other serious illness. For most, Give Kids the World is a brief escape from a life of doctors, hospitals, procedures, and astronomical medical expenses.
Give Kids the World Village hosts these families the help of generous donors and volunteers. Everywhere at the resort, smiling volunteers serve food, entertain guests, and assist in other ways every day. We felt blessed by their kindness, and we hope to return to Orlando to give back to Give Kids the World as volunteers. (Anyone over age 12 can volunteer as part of an Orlando vacation or on a long-term basis.)
Was the Make-A-Wish experience at Disney World wonderful? You bet. As wonderful as it was, though, the overflowing spirit of support and generosity we found at Give Kids the World Village was even better.
Andrew is a healthy 7-year-old today. His cancer has been in remission for over one year and he has no lasting complications. Andrew enjoys school, friends, and LEGOs, and is learning to play basketball.
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Monday, September 15th, 2014
We continue to bring attention to Childhood Cancer Awareness month with another story from a parent who has been affected. (Last week we featured a post from Stefani Healey, the mother of Brooke, who died of a rare form of brain cancer last September.) This post comes from Deborah Schwartz, whose son Eli is currently being treated for leukemia. We’re happy to say that Eli is feeling well and just started second grade, though he will continue to be treated twice a month until the summer of 2016.
It was February 8, 2013, but it feels like yesterday. I was leaving the supermarket at 10:30 a.m. when a call came in from my son’s school. It was already snowing hard as I got in my car; the Northeast was bracing for a blizzard.
The school nurse called to let to me know that my 5-year old son Eli’s gym teacher noticed his neck was quite swollen, and that I should come get him and bring him to his doctor right away. I drove straight to school with a car full of food and snacks to stock the house for what I thought would be a few fun days playing in the snow and hanging out inside.
When I got to school I found Eli looking somewhat unsure about the concern he was sensing from the school nurse. My heart started to race. His neck looked like a linebacker’s. How could I not have noticed? I called my daughter to the school office and called ahead en route to our pediatrician.
With the snow getting heavier outside, the doctor’s office was quiet. We went immediately into a room and in came the doctor. She looked, felt his neck, did a strep test, asked Eli how he was feeling and then left the room for a minute. She came back in with the senior doctor in the practice, which is never a good sign. The senior doctor examined Eli and a serious look washed over her face. I began to feel the panic set in.
The doctors asked me if I could please come with them into the other room, as the kids waited for a minute. She thought it might be cancer. “Excuse me, but what did you say?” A chill went through my body. They called ahead to Yale-New Haven Hospital for us, telling them to expect us within a few hours. I was in a daze, going through the motions, I had no idea what was happening, but off we went.
Now shaking and crying, I tried to pull myself together for just a few minutes, thinking that none of this made any sense, I was just at the grocery store. I collected the kids and called my husband who was in Vermont, already stuck in the blizzard. I called my parents who immediately got in their car. I went home and dropped my daughter at my neighbors, tears pouring out of me: “Can you please watch her while my parents are on their way?”
I packed a little bag of stuff for Eli and myself and got back on the road. With the blizzard in full force the roads were moving, but it was slow and all I wanted was to be there, it’s like time stood still. I looked in my rearview mirror and saw Eli’s unusually swollen neck. I just don’t know how I did not notice–my own child, right in front of me, every single day. How can I not have seen it?
We pulled into the children’s ER–they were expecting us. The first doctor came in to check on Eli. Unsure where all of this was going to lead us, we were both nervous and it showed. My heart was breaking as he was poked and prodded by kind, but unfamiliar faces. They started an IV, so that if they needed to take blood from him again he would already be accessed. He was as brave as he could be while entering a world of the unknown, he didn’t like how it felt and neither did I.
While we were waiting for results of the and X-ray and CAT scan, my father, who is a radiologist, finally arrived. Aside from his emotional support, it helped to have him there to make sense of the medical talk.
Eli had Lymphoma, but that was just the beginning. The next step would be a procedure to assess his lymph nodes, and determine whether the final diagnosis would be Leukemia and not Lymphoma. The blizzard was in full force and we’d have to wait a few days to get the answers we so desperately needed.
That night we were admitted to the hospital. While Eli was in bed, I paced the hallways in a fog. They were an unknown maze of colors and doors; the faces, sounds and smells were unfamiliar. How did we get here? We were supposed to be home sleeping peacefully in our own beds. But we weren’t, and wouldn’t be for quite some time.
The next few days of rounds with doctors, fellows, residents, nurses, a social worker and childcare were a blur. I barely slept or ate. I sat on the floor of the hallways at 2 a.m. and wept. I called close friends and family and started to fill them in on what little we knew.
We were finally able to go home for a couple of days only to turn back around when we found out that it was in fact Leukemia, officially called T-cell Acute Lymphoblastic Leukemia, which was in 37% of Eli’s bone marrow.
As a parent, I have always felt that it was my job to protect my children, and that if we watch out for them, take care of them, teach them to be good people, it would just all work out. Cancer wasn’t in the plan (not that it ever is). I was unsure I was strong enough to handle it not just for myself, but also for Eli and my family.
We took our place at the starting line of treatment, which included chemotherapy, six to eight months of active treatment with bi-weekly visits, followed by two to three years of maintenance and twice monthly treatments and checkups.
Anyone with a loved one who has gone through chemo knows that it is just horrible. Eli went through numerous additional procedures, which included him getting a port, or “button,” that will remain in his body for the next few years. The doctors went through the list of side affects, and for the most part, the experience turned out to be as awful as they warned.
We stayed in the hospital for 10 days to get everything started. I wanted to spare him the pain, but also wished for it to all move faster, to know he was further away from the disease and closer to having a normal life again, whatever that means.
I would not leave his side for as much as people tried to get me to. I walked the halls in the late hours of the night worrying about what this all meant to him and to all of us.
And so our travels back and forth to Yale began. A 45-minute drive that felt torturous. Eli hated going and was terrified when they had to access his button. He screamed and cried. He threw up a lot. I kept towels and wipes everywhere. He was tired. We were all tired. The doctors tried to manage his nausea with more drugs. The names of drugs I learned in the first month made my head spin: Peg Asparaginase, Vincristine, Bactrim, Zofran, and the list goes on.
After the first month of induction they tested Eli’s bone marrow again. This would determine the course of the next phase of treatment. The drugs did their first great job and he was put in the low risk category and would not need a bone marrow transplant or radiation. I think it was the first time I was able to breathe.
Doctors suggested we enter a study for a drug called Methotrexate. It was a randomized study and Eli ended up being in the group where he would get a high dosage of the drug, while staying in-patient for four days at a time for four cycles.
There’s so much to take in and so many decisions to be made. I’d always researched every single thing that had to do with my kids–looked at food labels, checked for recalls on toys–but here I was determining the fate of my child’s life with no firsthand information, and no way to know I was making the right decisions. We had no option but to release ourselves and take comfort in the incredible care of one of the best hospitals in the country.
The first few months sucked. There’s no other way to put it. It was winter and we were inside a lot. He felt like crap and it made me sad all day and all night. When he was awake I would lie next to him with my hand on his head, since that is the only thing that comforted him. When he was sleeping, I watched him sleep. Making sure he was breathing okay and feeling peaceful.
After the first couple of months, Eli started to get headaches and the doctors decided to do a MRI and then an MRV (of the veins) and noticed a small clot in a vein in his head. Apparently it was one of the potential side effects of the chemo. From that day forward I had to learn how to give him shots twice a day. I gave him approximately 550 shots and it was always a struggle. His arms and legs were constantly black and blue. He lost weight and gained weight. He grew 2 inches over the year. Yet every single day I wonder “how did this happen and how did we get through what we got through so far?” I’m still not entirely clear on the answer.
Usually an avid reader, I could barely concentrate on anything. So when I couldn’t sleep at night I plowed through all of the episodes of Breaking Bad, Weeds, Orange is the New Black, Homeland, and House of Cards. It was the only way I could escape what was going on in my head. I didn’t exercise, I didn’t eat as well as I should have, I didn’t get out, I just couldn’t focus on me. This is probably not what I should have done, but my head was not there.
The only thing that mattered was Eli and his big sister Charlie. She was also feeling the affects of this. She was as brave and strong as she could be. She knew her brother was sick and weak, but she also saw him getting a lot of attention. I showered her with as much as I could give. The school psychologist developed a close relationship with her providing her with a safe place to talk and let out her feelings. I was grateful, since the juggle and struggle with it all was mind-bending.
From day one friends, family and the community rallied around us. Close friends started a bi-weekly meal train and grocery shopping for us. Every week meals came and the love came with it into our home. There were weeks that would go by where we could not get out of the house for fear of Eli’s immune system being exposed to germs.
A text, a call, a hug, a cup of coffee, a warm scarf, a manicure gift card, flowers to cheer up the house, food, Legos (which became his new obsession being cooped up in the house), financial support, and just incredible love is what is getting me through this. With everything big and small that people did for us, the incredible kindness and thoughtfulness overwhelmed me. People who didn’t know us appeared in so many ways, and still do.
The intensity of our lives has been heightened. Relationships have been tested. My husband and I have been feeling the pressure, but there’s no time for drama when you are trying to save your child’s life.
At the beginning of this journey, a friend in the community introduced me to a woman whose daughter had something similar to Eli, and who was also at Yale. She was there for me in every way possible. Her mantra, which I have since adopted, is “forward march.” There is no other way. There are no shortcuts, no quick fixes.
No one ever imagines having to go through something like this with your child. We go back to Yale twice monthly now. It’s become our new normal. Eli lets the doctors check him out, mostly now with a smile since he knows there are games there to play, books to choose from, and amazing people to talk to and play with.
Eli is the bravest boy I know, and I watch him with wonder every day. I am trying to take his lead and be as strong as he is. Some days it works and others it doesn’t. I love to see him smile and laugh and even scream and stomp his feet. He may not remember all of this, and that’s more than okay. I will bear the burden of remembering it, and one day that will be okay too.
This post originally appeared on WomenYouShouldKnow.net.
Image: Stop Childhood Cancer sign via Shutterstock
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Friday, September 5th, 2014
There’s a mother in New Jersey who has been working faithfully for decades to keep children safe. Her name is Rosemarie D’Alessandro, and her mission was fueled by tragedy: the rape and murder of her 7-year-old daughter, Joan, who was killed by a neighbor–a high school chemistry teacher–when she was delivering Girl Scout Cookies to his home in 1973. That’s Joan in her Brownie uniform at right.
After the killer was eligible for parole in 1993, Rosemarie was told by the prosecutor’s office that if she didn’t fight, he could be freed. “I understood the seriousness of what they were telling me. I had no idea about getting laws through, but that’s what started the process. I knew I had to do something.” Rosemarie used all of her resourcefulness, her creativity, and her patience to push for Joan’s Law, passed first in New Jersey in 1997 and at the federal level in 1998, which was the first to require a mandatory life sentence for anyone who molests and murders a child under the age of 14. Unfortunately, the law named after Joan is not retroactive and therefore does not prevent her killer from being released from prison one day, but Rosemarie feels deep satisfaction from her efforts: “It wasn’t going to help us, but somebody had to change things, and it was going to start with me.” For the past four years, Rosemarie has been advocating for the law to extend to all children under age 18. (Why it doesn’t already has never been made clear to Rosemarie: “There must be something political.”)
In addition to legal advocacy, Rosemarie started The Joan Angela D’Alessandro Memorial Foundation, which raises funds to give disadvantaged children positive experiences, brings attention to child protection and safety issues, and advocates for the rights of victims and provides victims with support. She also created a memorial in the center of her town that includes a garden, a 5,670-lb. stone sculpture inscribed with Joan’s story and information about the laws created in her name, and a bench. If you look closely at the top center of the bench, you’ll see the word “Joan,” which was replicated from Joan’s own handwriting on a school workbook:
“The sculpture and garden is there to bring the subject of violence against children out into the open,” Rosemarie explains. Her hope is that people read about Joan’s story and speak up if they know someone could be at risk of harming a child. “It starts with Joan, but it’s about the children of today and tomorrow.”
Rosemarie has this message for parents: “You have to be vigilant when it comes to protecting your children, but still let them be children. You should not be paranoid–I raised four children after Joan died–but if you get a gut feeling, pay attention to it.”
Joan would have been 49 this Sunday. Later in the month, lights will be installed at the sculpture garden created in her honor. Rosemarie’s goal is for the lights to be turned on on September 15, which will mark the 10th anniversary of the day Joan’s Law was signed in New York State. If you’d like to help this tenacious mother in her quest to broaden Joan’s Law, visit the foundation’s Facebook page.
Photos courtesy of Joansjoy.org.
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