Facing down a Type One Diabetes diagnosis – Ella's story

When your child is diagnosed with Type 1 Diabetes your life changes overnight. Judy Liphman shares her daughter Ella’s story:

EllaT1DA visit to the Emergency Department

“Ella was just 3 ½ years old, and it was a seemingly normal Friday morning.  My husband, Bill, was getting us up and ready for the day, Ella was enjoying her cup of coffee….I mean milk….getting her day started, watching cartoons on the couch.  Without warning, she vomited all over the place.  Not the usual start to the day.  While Bill attempted to salvage our sofa, I attempted to clean up Ella.  Neither one of us had an easy task.

We decided preschool could wait,  we took her to the pediatrician instead.

By the time we left for the doctor’s office, she was getting a little loopy, plus her breathing was getting much harder.  So hard, in fact, that Bill had to carry her to the car, she couldn’t even walk.”

At the pediatrician’s office, the doctor performed a quick, but thorough exam.

“This looks metabolic.  To nail down exactly what it is, why don’t you just head over to TMC.  They can run the tests much faster than we can.”

The doctor’s office called ahead, and indeed the Pediatric Emergency Department staff was ready for Ella when they arrived.

Receiving the Type 1 Diabetes Diagnosis

“Once at TMC, it took the head of the Pediatric ICU all of 2 seconds to tell us our daughter was in DKA, or Diabetic Ketoacidosis.  Her pancreas had stopped producing insulin, and her blood glucose was through the roof.

They started an IV as quickly as possible, but by now she was so sick, that it was almost impossible to get even the tiniest needle into her clamped-down veins.  One of the toughest times was trying to get a large enough blood sample to confirm the diagnosis.  Drawing from the IV wasn’t an option, trying for the arterial vein didn’t work either.  The femoral artery, along the inside of the thigh at the crotch, was our last attempt.  I know of adults who would break down into tears at the mere mention of a femoral blood stick, and Ella had to undergo it with no anesthesia!

It was at this point we first encountered the Child Life Specialists.”

What is a Child Life Specialist

A Child Life Specialist is a highly trained professional who works with children, families, physicians, nurses, social workers and other therapists. Their goal is to make the hospital experience the best it can be for children and families. That means creating an environment that respects and incorporates the emotional well-being of children and recognizes the family as part of the recovery process.

“They have many tools at their disposal (Thank you, Children’s Miracle Network) like iPads, movies, crafts, and of course lots of coloring pages and crayons.

Ella had many painful procedures to undergo.  Without Child Life, it would have been hard for her to keep a smile on her face. The nurses remarked that they are used to being hated by the kids in the PICU, because of the “nasty things” they have to do to help the kiddos get healthy again.  Ella was able to keep the love for them, even after the hard times, and keep a smile on her face thanks to the Child Life Specialists.”

Were there warning signs that Ella had diabetes?

“Children as young as Ella was can’t verbalize that something was going wrong with their bodies.  Little children just keep going and going until they just can’t compensate any more,and then they “fall off the cliff” and their body starts shutting down.

Yes, I noticed she was thirsty, but we’re talking August and September in Tucson, who isn’t thirsty?

Yes, she had started taking some naps again, but we had her in swimming lessons twice a week that summer and swim class often can tire a child.

Yes, she started wetting the bed, but her second year of preschool had just begun, and all the literature told me to expect some backsliding during big changes.

Did I see these classic signs of diabetes? Absolutely, but each symptom could easily be dismissed for other reasons, and we had no history of Type 1 Diabetes in our family.  It was the farthest thing from our minds.”

Know the symptoms of Type 1 Diabetes so you can be on the look out

The symptoms can appear in infants. Recognizing these symptoms could save a life.

Warning signs (these may occur suddenly):
  • Extreme thirst
  • Frequent urination
  • Sudden vision changes
  • Sugar in urine
  • Fruity, sweet, or wine-like odor on breath
  • Increased appetite
  • Sudden weight loss
  • Drowsiness, lethargy
  • Heavy, labored breathing
  • Stupor, unconsciousness

What happened after the T1D diagnosis?

“The first few days are a blur, but the thing that stands out the most to us was a visit from the then Director of Women’s and Children’s, Mimi Warwick.  She didn’t come to see us as a nurse though, she came to us a mother with a T1D child.  She said, “I know you’re being overwhelmed with information right now, but please just know, she’s going to be OK. “  Her son was diagnosed a few years prior, and could already compute his carb counts and take care of a low blood sugar emergency, called hypoglycemia, all on his own.  What tenderness, from a mom who knew exactly what I was going thru!  She set aside her nurse’s hat, and put on her mom’s hat, and spoke hope back into our lives.”

Living with Type 1 Diabetes

“Getting a diagnosis for your 3 year old daughter of Type 1 Diabetes can rock you to your foundation, your entire life changes.  You can “fake it ‘til ya make it” with a healthy newborn, but the learning curve with Type 1 Diabetes is pretty steep!  We have to carry food sources AT ALL TIMES, as well as back ups for her diabetes kit: insulin, cotton pads, alcohol wipes, lancets to prick her tiny fingers, and test strips to test her blood a minimum of 8 times a day.  Like most T1D families, we had to give Ella insulin via injections at first.  Even though the needles are small, what person, let alone kid, wants to get 4 or 5 shots each and every day?!
Getting Ella on to an insulin pump was a priority for us, and in less than six weeks, we activated our first OmniPod. The technology is amazing, and instead of getting a bunch of pokes each day, she gets one jab every three days, when we activate a new pod.  We still have good days and tough days, but now, at the age of 7, she is blossoming into a compassionate, loving young girl who can teach you all about how she cares for her body.”

Investing in Relationships

“We still visit our nurse friends on the PICU, they all fell in love with each other, and they even made her an honorary nurse after our last visit.  The staff there have kept in contact with us, not because it is their job, but because they truly invest themselves in their patients and their families.”

How does Ella respond to her T1D diagnosis?

“By the time we were released from the hospital the first time, she was checking her own blood glucose levels….at the age of 3 ½.  The doctors and nurses all joked with us that we better have a really good college fund because Ella was headed to medical school!

Now, at 7 years old, Ella says she wants to be a veterinarian AND a pediatrician.  When I try to explain that because of all the schooling, usually people pick one or the other.  Her response:  “Then I guess I’ll be the first!”  I may have an idea where she’ll practice the human side of the equation!

Having a child with a chronic condition that can be life-threatening, and is certainly not what I would have wished for our little family, but with loving staff at TMC for Children, we have figured out our ‘new normal’ and have encouraged Ella to be the best, healthiest girl she can be.”

About the author:

Ella’s mom, Judy Lipman,  is a co-chair on the Patient Family Advisory Councils (PFAC). The PFAC for Women’s & Children’s Services serves as an advisory resource for Tucson Medical Center. Made up of families, physicians, clinicians and staff, the council works to provide a venue for patients and families to offer input into policy, care, education and program development.

PFAC’s mission is to create a patient and family centered environment, which promotes the best possible collaboration among patients, families, physicians and clinicians, while working to improve the standard and delivery of care. In short, it’s a way to identify and address the needs of patients and families, while continuing to support Tucson’s community hospital. To find out more about PFAC and how you can be part of this vital organization check out this page.

Check this page to find out how you can support the Child Life Specialists and the critical work they do at TMC for Children for our children and their families.