Thursday, May 24, 2012

Could an ER handle your child? Are you sure?

The seizure started around 6:45 a.m. Max had crashed in bed with me and Dave; I woke up when he did. I felt the heat radiating through his pajamas—Max had a major fever. I jumped up to grab a thermometer, and that's when I saw one of his feet start to twitch. In a heartbeat, I knew what was happening.

"DAVE!" I screamed. "LOOK."

Dave woke up and saw. And then, suddenly, Max's entire body was shaking. I started crying as I dialed 911. "My child is having a seizure," I shouted to the woman on the other end of the line.

I remember Dave carrying Max downstairs and laying him on the sofa in our living room. I bent over and kept saying "Max, Max, Max." His eyes were rolled up, and he did not respond. Max was two years old at the time but to this day, I have flashbacks when I sit on that sofa.

Two policemen showed up; the ambulance took what seemed like forever to arrive. The paramedics couldn't stop the seizure in our 10-minute drive to the hospital. In the ER, the doctor asked for a history as Max lay on a gurney, naked except for his diaper, shaking nonstop. The doctor told us that the seizure medication wasn't working, and asked for the number of our pediatric neurologist to confer with him.

Max's seizure, a grand mal, lasted close to an hour. Despite the hell I'd been through during Max's two-week stay in the NICU, I think that hour counts as the worst one of my life.

I thought we were losing Max.

That was the only major interaction I've had with an ER since Max was born; he had one other seizure at age 5, but it stopped within two minutes. After that, our neuro upped his medication, and he's been fine since then. We were lucky; neither seizure had lasting effects.

To this day, I have no idea whether that doctor would have been able to stop Max's seizure sooner if he had better training in pediatric care. There's a chance he didn't, as I've learned from the R Baby Foundation. The nonprofit is devoted to improving pediatric emergency room care; 1 in 5 children will make one or more visit visit to an emergency department this year. After my friend Rebecca invited me to attend a fifth-anniversary gala, I read up on the work R Baby does—and I was shocked by some of the facts.
Scary stat #1: 1 in 141 babies dies every year in the United States. That's 30,000 babies who will die before their 1st birthday.

Scary stat #2: How quickly and accurately routine illnesses and emergencies are treated can mean the difference between life and death. The majority of emergency departments (EDs) are not prepared to handle babies and children. Children make up 27 percent of all emergency department visits, but only 6 percent of EDs in the US have the necessary supplies for pediatric emergencies.

Scary stat #3: A pediatric Emergency Department should be the safest for a child who needs urgent care, because it's supposed to have specially-trained doctors. However, there are no uniform standards for Pediatric Emergency Rooms; the ones around the country have varying degrees of trained specialists and equipment readiness. R Baby is advocating for a clear definition of Pediatric Emergency Rooms on a leveled system, similar to Trauma Centers; they also fund hospital programs around the country and educate parents.

If this doesn't unnerve you, the story of R Baby's founders, Phyllis and Andrew Rabinowitz, will. Back in 2006 they had a baby, Rebecca, born four weeks early. She came home from the NICU, seemingly healthy. When she got seriously congested, during repeated visits to the local ER the couple were told she had a common cold.

Rebecca passed away on the morning of July 21. Her parents later found out she'd contracted an enteroviral infection that can be life-treathening to babies. As they write, "Had her symptoms been treated, she may still be here today."
We're headed into "trauma season"—summer is the most dangerous time of years for kids, according to a study by the National Safe KIDS Campaign. Nearly half of all unintentional, injury-related deaths happen during summer months.

What you can do to keep your child safe:

• Ask your pediatrician which hospital he/she is affiliated with. Find out whether or not this is a pediatric ER, and what the local ER recommendations are. In case of an emergency, calling 911 or the closest ER (general or pediatric) is the best choice.

• Read up on Emergency Room Resources at R Baby; you can download info on how to know when to take a baby to the ER, what to expect when you arrive there, and items and information to have on hand.

• Share this information with babysitters, nannies and other caregivers in your child's life.

Simple ways to make ERs safer for children everywhere:

Sign the petition to improve pediatric emergency care.

Share your ER story to help inform other parents.

• Shop to help: For every Glassybaby Precious candle set sold, 10 percent benefits the R Baby Foundation.

The R Baby Gala was held at The Plaza Hotel, an elegant night with gourmet bites from five-star chefs and women in beautiful dresses. I was proud to see Julia Beck, founder & CEO of Forty Weeks, receive the R Baby Champion Award. The silent auction and other efforts pulled in some $1.25 million for the foundation.

But there was a terrible truth beneath that glamorous night: Our children are not safe. It's reassuring to know The R Baby Foundation is working hard to change that.

Top image/Dora Jacobs and the Stump-Coales


  1. So happy you posted this as it hits close to home for me, too. Our daughter had a seizure in the middle of the night, also, at 4 months old. We drove her to the hospital where she was born and where her pedi is close to. I walked in with her limp body in my arms and they MADE ME FILL OUT PAPERWORK! When I finally started screaming and yelling, nurses ran from the back and took her from me. We were transferred in a few hours to a hospital that was equipped with a Children's ED. They didn't even have IVs small enough to make a proper IV for our daughter...
    I now know to go there in an emergency! But, that night and circumstances are forever stamped into my mind. (And thankfully she was okay. It was a hypoglycemic seizure and she's not had one since!)
    Thanks for educating everyone :)

  2. I was stunned to learn last week that our hospital doesn't have extension sets for g-tubes on hand to administer medicine to tube fed kids (like my daughter). She went in for an appointment and had a 102.3 fever and they couldn't even give her the meds she needed and she ended up having a febrile seizure right there in the office. Talk about a helpless feeling!

  3. Wow.
    Our pediatricians office was <.25 miles from the nearest hospital ER. They always recommended taking sick kids to the ped. hospital 20 miles away. I'm absolutely positive this saved Jonah's life when he was 10 months old, and they quickly diagnosed and started treating his bacterial meningitis. If we had stopped at the local ER where they didn't have a ped. specialist, I doubt treatment would have been rendered so quickly (he was VERY hard to place and IV in, even with ped. supplies!)

  4. Agreed, we had a horrid experience at a very well know, reputable, hospital in Northern Va when our son was 3 weeks old. Had we not insisted the ER doctor call in the pediatric surgeon on call "just to consult" our son would have died.

  5. My son stopped eating for 2 weeks. I took him to the ER everyday just for them to tell me he was constipated, or we were exaggerating, he or I was faking it for attention. We went to 3 different hospitals, 3 different ERs. They sent us home every time. Finally I threw a fit making a scene refusing to leave until they treated my son, and he was able to eat without pain medication. They admitted us that day. They still didn't treat him for over a week, they still thought we were faking it. Eventually we found out he had contracted a disease that destroyed his entire digestive tract from mouth to bottom making it excruciating to eat. By the time we found it, it was almost too late to save his digestive tract or his life. It still makes me sick to think how close we were to loosing him, and how eagerly they kicked us out of those ERs every time. And when he was finally admitted we had to stay at a hospital extremely far away from our house even though there were four other hospitals between our house and that one, because it was the only hospital equipped for a 4 year old.
    We have had multiple big ER scares, and finally found one that is prepared for young children I will never go anywhere else as long as I can help it.
    It is disgusting the lack of thought that they put into saving our children's lives. It seems they're either not equipped for children, or don't care enough to treat them, either way something has got to change.

  6. My son started with seizures at 2 years old as well. A fever of 100 is enough to start a febrile seizure but he has had them without fever as well. We are lucky that the largest local hospital is a childrens hospital as well. Another piece of advice I like to pass one is not to be afraid to question the Drs and nurses. Speak up for your child and your gut feeling and if your not satisfied go somewhere else for a second opinion

  7. Wow, this hits home.
    We had a similar experience with my son when we were delayed by beurocracy. We later managed to get a 'passport' which was a letter summing up his condition and allowed through ER quickly. You can't diagnose an ill child who has underlying conditions if you don't know what those conditions are. Over here in the UK we have hospital trusts which group local hospitals and Doctors and coordinate care. You guys have to overcome this nonsense and this sounds like the right way to do it. Thanks again Ellen

  8. Fantastic post Ellen. I have shared this with my Mommy group!

  9. Excellent post. We had a very bad experience in our local ER when my little guy was 2(when we left the nurse told me she had to be careful what she said but I should take him to his doc immediately when they opened since she could see he was not okay but the docs/this ER could not deal with his level of care and were instead saying he just has a bug. She was correct.). Now we drive an hour to the hospital because we know the local one cannot handle his care and needs.

  10. Yay for featuring Rbaby! I am involved with our local chapter, and it's great - since my daughters life was saved by emergency responders after her choking accident, this type of training is relevant and important - she was only 11 months old. Great!

  11. Thank you for sharing my photo of my baby guy with something so important. When he caught RSV at 5 weeks old, it seemed like tragedy to us, since he was our 4th baby and none had ever been sick. But being in the PICU of a Baltiomre children's hospital taught me that we could be so much much worse off. Being stuck in the hospital, but feeling useless and helpless and knowing there are three other sick kids at home just tore at us. It was an excrutiating couple of weeks. My heart goes out to you strong mammas and pappas with sick children, and my prayers as well.

  12. My son has had multiple seizures. And the first one was the most terrifying. Your post brought me back to it. Thankfully, my son has been seizure free for almost two years....

  13. Thank you for sharing this organization! It's the first I heard of it.
    If I didn't have the experience in caring for my daughter (age 5) and left it up to the ER at Geisinger Medical Center who knows if she'd still be here. Their PICU is awesome once you are settled in but they do not staff a pediatrician in the ER or at least a doctor knowledgeable with breathing difficulties. I travel with oxygen in case we can't get to a hospital fast enough and Juli starts to struggle with breathing. We had her at 4+ liters of oxygen and her pulse ox was under 92 and the triage nurse said she looked fine and told us to wait! Even after being put in a room we used our abuterol because they couldn't get it within an hour! We ended up getting Julianna's bi-pap machine out of the car because they still weren't doing anything for her after a few hours and she was crashing fast and I was doing whatever I could think of to prevent my daughter from being put on life support! They told us they called a pediatrician which took over 2 hours to arrive.

    Even if you have a healthy child you should make sure your local ER can handle pediatrics well! Some staff pediatricians for only a few hours a day while others have them "on call" which can take quite awhile. Summer is here and you owe it to your child to make sure they will receive the best care in the event of an emergency!

  14. You're doing such a tremendous service for other parents. I can only imagine the difference between parents of special needs children today and the information drought for parents, like mine, who were doing it alone in the 1950s.

    Keep up the good work.

  15. Wow you had me scared Ellen I thought Max just had a seizure.

  16. Thank you for sharing! Definitely will be sharing!

  17. When our son, who has Asperger's, sustained what ended up being a dislocation and fracture of his toe last summer, we received fantastic care at our local hospital which had recently opened a Pediatric ED. The staff was particularly attuned to both his age and his disability and approached his care in such a way to (a) treat him excellently and (b) make him emotionally comfortable. We know that we are so fortunate to have this resource in our backyard.

  18. This post strikes a chord with me! Last week I was so angry at the stories I was hearing about children not being served in our healthcare system I started a blog page about it.

    I was furious about the stories I heard from moms in the community about dying babies, a child with brain damage due to anoxia (and Dr's said he's fine, blue was his 'normal' skin tone), people chasing diagnoses and ridiculous emergency care.

    I have been advised by urban health care professional to NOT go to certain rual area because of the substandard healthcare there. If the healthcare professional say there's a problem, there's a problem.

    I know RBaby is an American site, we need similar action on our side of the border.


Thanks for sharing!

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