It’s So Much More Than A Toy…

While many children enjoyed the holidays at home with their families this year, there were many who didn’t, including the patients at CT Children’s Medical Center. Knowing how difficult that is, the employees at CT Children’s go above and beyond to help make the holidays extra special for their patients, especially those who are Child Life Specialists. A Child Life Specialist plays an essential role at CT Children’s —they serve as a liaison between the child and medicine, and help to make the whole hospital experience a lot easier for the families. Jennifer Wheaton is one of these specialists.

jenn wheaton 3
Why did you want to become a Child Life Specialist?
JW: I wanted to help hospitalized children who were struggling with illness or injury.
As a child life specialist, I have a unique opportunity to help teach kids about the hospital and their diagnosis through play and, hopefully, help to make the hospital a less scary place.

What role do toys play in the treatment and recover at CT Children’s?
JW: Play is the work of children! Kids learn about their environment and process
events, in particular stressful events, through play. We use toys in our playrooms
throughout the hospital to give kids a safe place to interact with other kids over a
board game, to engage in imaginative play in our pretend kitchen or work bench, to build Legos and do art activities. Toys are also used by child life specialists at the bedside for kids who are too sick to come out of their rooms. It’s amazing ho w
even the sickest kids in our care still have an innate desire to play. We do our best to help adapt toys and games so that any child, regardless of physical limitations or illness, has the opportunity to just be a kid and play as much as possible.

Amelia with toys

Why is it important for children to understand their treatment?
JW: Kids are able to cope better with the hospital experience when they understand what is happening. Imagine being in an unfamiliar place like a hospital, with
staff rushing in and out, having sometimes painful procedures or tests, and not
understanding why. By taking away the unknown, and explaining each piece of
the hospital experience, kids are able to develop some mastery over their illness
and trust in their caregivers.

What are the holidays like for the patients and how does the staff help?
JW: The holidays are often a hard time for kids to be in the hospital. They may be separated from family, classmates, and missing out on holiday traditions that they would normally be partaking in. We always do our best to make the time brighter. There are decorations all over the hospital and lots of our group art activities may be focused around making decorations for the kids’ hospital rooms or holiday cards for family and friends. Santa visits the hospital and spends time with the kids, and staff get really involved with Stuff-a-Stocking which ensures that each child in the hospital for the holidays feels remembered and special when they receive gifts picked out just for them by one of our staff members.

14 Santa Visit 010

What makes CT Children’s different than other children’s hospitals?
JW: CT Children’s is special because we really do focus on families. Of course, the main goal is getting each child medically well, but there’s an emphasis on providing emotional support for kids and families, as well. Kids aren’t just little adults, they require a special type of care, and I feel like we do an excellent job of providing that at CT Children’s.

Advancing Healthcare in Haiti

by Brendan Campbell, MD, MPH, Director of Pediatric Trauma at Connecticut Children’s

Dr. Brendan Campbell, pediatric surgeon at Connecticut Children’s Medical Center, and retiree Dr. Donald Hight, previous head of pediatric surgery, spent time in Haiti earlier this month. Below, Dr. Campbell shares what they learned, experienced and accomplished during their week long journey.

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Day 3

The poverty and misery here is mind numbing. A profoundly malnourished baby dropped off here Saturday died this morning.

The first bright spot of the day was meeting Sister Anne. She’s an Irish nun from Dublin in her 70’s who’s making a real difference in the lives of many kids here. Her mission in Milot is nothing short of inspirational.

Monday will be our first OR day. We’re abandoning minimally invasive surgery, for maximally invasive surgery. Open gastrostomy tube placement, followed by an open Nissen fundoplication and G tube. Our third case came in to see us from an orphanage for “colostomy closure” with no records or history. First thing we did was look at the perineum: unrepaired anorectal malformation. Finally, a problem we can fix.

Second bright spot of the day came during our visit to a nearby orphanage. This 40 acre property has its own school and a plan for sustainable agriculture on site. The 45 kids who live there are very well cared for and will have opportunity.

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Day 4

There is no shortage of pathology here, but it’s hard to anticipate the challenges that will trip you up. It would have been great to have a pediatric anesthesiologist from IAA to place IVs. A lack of IV access is one of the biggest impediments to providing care to children here, both surgical and otherwise.

The three ORs at Hopital Sacre Coeur have basic general supplies and instruments, but not much for children. In preparing for our first anorectal malformation case we needed some supplies (e.g, infant sized Foley, 6-0 silk suture) and were referred to a supply “bubble” in the compound where we’re staying. Inside this building is an incredible cache of supplies (surgical staplers, German made surgical instruments, lines, tubes, meds). We found what we needed, but there is currently not a system in place to match these supplies to the needs of the hospital, which is located right next door.

Hightlight of the day – My fellow colleague, Dr. Hight getting attacked by a goat walking home from the hospital (photo below is of the goat attack as it developed).

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Day 5

After seven days in Milot we learned a great deal and hopefully accomplished some good. We saw more pediatric deaths in a one week than we see in six month stretches back home, and treated kids with conditions – like kwashiorkor, active tuberculosis, and advanced HIV infection – that are almost unheard of in the United States.

To function effectively in Haiti you have to reframe your clinical mindset, and function well outside of your usual comfort zone. Simple things aren’t so simple, and your diagnostic and treatment options are extremely limited. There are no anatomic pathology or microbiology services available. Poor quality old fashioned plain films are all you have for radiologic assessment. Flies in the operating room are commonplace, and you have no way of knowing what bacterial hazards lurk in the water that flows into the scrub sinks.

One of the cases we had illustrates some of the challenges clearly. A 4 year old fell 2 stories, and had a palpable skull fracture and cephalohematoma. His parents brought him in 5 hours after the injury and his GCS was 6. There was no CT scanner, neurosurgeon, or helicopter. We intubated him, then blindly managed his presumably elevated ICP with mannitol, sedation, and pressors. Then his left pupil blew. Principles of damage control neurosurgery would dictate that the next step would be to drill a burr hole on the ipsilateral side, but as a bridge to what?

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The healthcare team at Hopital Sacre Coeur does amazing things with extremely limited resources. The most valuable accomplishment provided by our team was continuing to build relationships with their physicians and providing education to their pediatric nurses who are eager to learn. From a pediatric general surgery perspective we now know what to expect, and how to do it better next time.

A special thanks to my surgical colleagues for their guidance, support, and harassment related to my various clinical dilemmas. And a special thanks to Dr. Hight who wasn’t quite sure what I had gotten him into at the outset, but who left Haiti strategizing about how to broaden our impact on the next trip.

Coming Home: Katrina’s Story

by: Samantha Theriaque, Katrina’s mom

Words cannot even begin to express how happy and relieved we were when our daughter, Katrina, was finally able to come home. Five weeks. That’s how long she was at Connecticut Children’s Medical Center recuperating from her last surgery.

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Connecticut Children’s has been a critical part of Katrina’s care journey. The staff has been so caring and the environment is tailored to kids, which is very important to all of us, especially Katrina. A hospital can be a very scary place for a child, but the nurses and doctors ease her fears and make her more comfortable.

Katrina’s health issues were brought to our attention before she was born. At my 20-week ultrasound, my husband, George, and I discovered that there was something different about our daughter. Doctors initially saw that Katrina’s bones were short and bowed, an indicator that she had skeletal dysplasia – or what is commonly referred to as dwarfism. However, it wasn’t until 27 weeks that we learned the full severity of her condition.

Katrina has a severe form of osteogenesis imperfecta (OI) – also known as brittle bone disease – a genetic disorder characterized by bones that break easily, often for little or no apparent reason. We learned that children like Katrina may have mild symptoms at birth but can develop more severe conditions over time. In December of 2006, just 32 weeks into my pregnancy, Katrina was born.

Shortly after Katrina’s first birthday we were told that Katrina needed to have a shunt inserted into her brain. We were in the process of moving to Connecticut, so we decided to get a second opinion – and we were so glad we did! We met with Dr. Paul Kanev, Chief of Neurosurgery and Medical Director of the Craniofacial Team at Connecticut Children’s, who reviewed Katrina’s case and determined that surgery was not necessary.

In addition to brittle bone disease, Katrina also suffers from hearing loss, eye astigmatisms, and a condition that causes the teeth to be weaker than normal. She is currently seen by almost all of the departments at the Medical Center, including Endocrinology for regular infusions to slow down rapid bone growth, allowing them more time to become denser. Despite such grueling procedures, every experience has been positive.

At age seven, Katrina underwent cervical spinal fusion surgery. Due to the softening of the bones at
the base, her skull was sinking onto her upper cervical spine. Left untreated, this would have caused irreversible nerve damage. Dr. Jonathan Martin, a neurosurgeon at Connecticut Children’s, performed the surgery, and while it was our first time with him, we knew we were in good hands.

Today, Katrina’s grades are great, her friends love her and she’s in such a good place. She gets to be a regular kid. She has also been able to accomplish most of her physical goals, and once fully recovered from the surgery, she will start an aggressive physical therapy regimen.

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Connecticut Children’s is a heartwarming hospital with an amazing staff who do everything they can to help children and their families. The love the staff has shown is incredible, and they are all amazing at what they do. Katrina has been through so much and sometimes the amount of pain has been enormous. However, despite it all, she loves all of her doctors.

As her parents, it is very hard to watch her go through all of this. But we don’t always have a choice. We adapt. We do what we have to do. It’s so reassuring to know the lengths that our friends at Connecticut Children’s will go for Katrina, and we couldn’t be more thankful to everyone who has helped her “come home.”

Will it ever happen?!?

by: Monica B, a happy but somewhat desperate mommy

b and olaf

Since becoming a mom 2 ½ year ago, my life has changed in ways “they” never tell you about. Don’t get me wrong, I’ve loved (ok, mostly loved) every second of my “new” life…but there’s one thing about it that very well could be the end of me.

Pooping. In. The. Potty.

I truly had no idea how much this seemingly IMPOSSIBLE feat with my son had consumed me, until I found its become the topic of EVERY CONVERSATION I have with fellow moms and (let’s be honest) ANY human being who is kind enough to let me rant. Just a few days ago, I was talking poo right before an awards banquet at work with an acquaintance who I’ve known casually (at best) for a year. By the end of the 20 MINUTE CONVERSATION I felt a bond with her that somehow allowed me to sorta forgive myself for not knowing how or when or why I couldn’t conquer this potty training thing with my son, B.

I’m an A personality with slight OCD tendencies (poor, poor, B.) I’ve been pretty good at almost everything I’ve ever tackled in life. In fact, I tried golf ONCE and that was it because I WASN’T GOOD at it. Don’t judge. I knew after a few swings of the stupid club, golf wasn’t for me. So I just decided no need to continue on. I guess some will call me a quitter, but to each his own.

As for B and this whole poo-poo in the potty thing though- there’s no walking away, no giving up. It’s got to happen at some point right? I mean, could I really be the only mother in the world who one day has a 10-year-old still in diapers? That’s absurd!?! (right? That is absurd, right? I mean short of some sort of medical illness or disease that doesn’t happy with a perfectly healthy little boy, does it???)

b sleeping standing up w diaperPoking out in all its glory! Yes, my kid can sleep standing up.

I’ve tried it all. I’ve done positive reinforcement, M&Ms, stickers, offered up an unnamed SUPER prize, hell I’ve even tried to just sit down and reason with the kid:

Mommy: B you can’t go to pre-school if you don’t go poopy in the potty

B: No mommy, I poopy in my diiiiaper (he just LOVES to stretch out the word)

Mommy: Then you can’t go to pre-school with your friends

B: Yes mommy, I bring LOTS of diapers with me, BIIIIGGG ones (the stinker knows he needs big ones for all poo that leaks out of him)

I’ve had people tell me ‘don’t stress, he’ll go when he’s ready…..’ Will he though?

B: (in the middle of building a tower) Mommy I go poopy. I be right back.

Mommy: You’ll be right back? Where are you going?

B: Go away mommy. I poopy in my diaper.

Mommy: B let’s go on the potty, it would make mommy so happy.

B: (pause) mommy happy? No mommy. I happy pooping in MY diaper.

How is it that he can have this ENTIRE conversation with me, reasoning and all, yet I can’t get him to poo in the potty even if my life depended on it. WHY DON’T THEY TELL YOU THIS STUFF WHEN YOURE PREGNANT?

My friend told me she became SO OBSESSED with getting her little one to poo on the potty that she quickly found herself in a dark, dark place. She felt like she wasn’t a good mom because potty training had consumed her every waking moment.

I know there are books upon books about this stuff out there, but I wasn’t supposed to need THOSE books! This mommy thing was gonna be a walk in the park! I was gonna have the smartest kid on the block who would just KNOW how everything was supposed to be done. I know potty training isn’t necessarily tied to intelligence (because honestly, at this point, he’s outsmarting me by refusing to use the toilet) but come on kid! I’ll take you Disney World if that’s what you want!

So, I’m putting it out there. Hopefully I’m not the only parent in the world who has struggled with this. Do I just back off? Do I keep pushing? Do I bribe? Do I encourage? Do I just plain have a breakdown? (ok, I’m being a little dramatic….ALRIGHT, a lot dramatic) Please, help a new mommy out and let me know what worked and didn’t work for you.

b standing potty

B proudly STANDING on his potty in order to reach the sink and brush his teeth. I am thankful he enjoys good oral hygiene if nothing else!

Meanwhile, I’ll continue to ask the same question to my 2 ½ year old that I find myself asking a gazillion times a day: WHY WON’T YOU POOP IN THE POTTY KID? PRETTY PRETTY PLEASE!!!! Your toilet seat has ELMO cheering you on for crying out loud. If not for me, do it for Elmo please? (GULP)