G is for Grief and Grandma

“MG”, a dear friend of mine died recently. She had been fighting illness for over eight years and before thinking that is long enough, the health professionals who got to know her, regarded her as a miracle person. There were times of bounce back and return to health.

Even in the ill stages my friend was not known for sitting back, she took herself to and from treatment at different times for many years, was dynamic, stylish, generous and energetic. She had a spirit of compassion, acceptance of others and was also gifted with the ability to care. Her language of love included cooking fresh food from scratch, recipes came from the top of her head along with the dishes that just kept coming. MG always had a beautiful home and used her green thumbs to create a lush garden. Dance was a lifelong passion and included teaching seniors. Over recent years she cherished time with her grandchildren and cared for one grandson from nine months old for several days a week. With a sparkle in her eyes and a song in her voice, MG loved a lot and left many better off with her presence.

It was not easy for MG to be cared for in the last few months, having spent most of her life giving to others. Yet even at the end, in her fragile state, she reached out to her grandson and they began a little dance by the hospital bed.  Hearing about this caught my breath away.

“Yet even at the end, in her fragile state, she reached out to her grandson and they began a little dance by the hospital bed”

For much of his three years, this little boy had known Grandma was sick and also that she went to hospital. Recently, he watched nurses asking Grandma questions such as “what’s your name, birthdate and is this your medication?” Visiting Grandma in hospital meant he was an expert observer of Grandma’s care. It was a poignant moment for his mother, when she was about to take some medicine and her three-year old asked, “where’s your bracelet, what’s your name and birthdate?” With these words, I’m taken to a childish place.
This little boy’s parents had communicated about Grandma’s sickness and then her death. There are many children who are not given this opportunity, through circumstances and by parent or carer choice.

Children approaching a medical or surgical procedure are cared for by adults who are trained and experienced in pediatrics, they are “child-friendly”. However, children visiting sick adults in hospital are in an adult world with strange circumstances, sights and sounds.  I wonder what children who face this experience think? Parents and carers are there to guide, comfort and help make sense of what is happening.

My friend MG and her grandson, had a unique way of observing life and death. Amidst the grief felt by families, children observe many things. I've learned that a child’s approach to death may catch adults by surprise and for at least a moment, take our breath away.

Jillian Rattray

AWCH librarian
http://Library.awch.org.au
August 2015

Photograph: thank you to the children who created dancing grandmother, grandson and the special happy tree.

The three little “P’s” - Playgroup and Peppa Pig

Children were excited when Peppa Pig Goes to Hospital was the story of the day at one Sydney play group. There were about 15 children, mainly two year olds and pre-schoolers, who sat on the story time mat. During playtime they couldn't wait to put bandages on their dolls or teddies and one boy carefully bandaged his dinosaur’s tail. Craft was a lot of fun with Humpty Dumpty, both before and after the accident, some children preferred the ambulance craft. It was a bustling morning but there was time for children to select a book from our display and have a quiet read. A few did this.  There were over twenty books to browse or borrow and several parents commented about the range of books available.

Before the story, children were told, ‘When we go to see a doctor or nurse we can take a special toy or book and we will have our mum or dad or person who cares with us’. Peppa pig’s hospital room had a bright rainbow and after the story I commented, ‘We can always play and draw pictures when visiting the doctors or in hospital’.

The playgroup was well equipped with hospital play kits including stethoscopes, bandages and toy thermometers. If any toy was short of a bandage, a box of bandaids was within reach. One little girl showed me green dots all over her baby’s head. She and her mother had carefully placed bandaids over the middle of the baby’s head covering the ‘dots’. This was clearly a topic the kids related to.

I was the first of several visitors for term three with the theme, 'people who care for us'. The playgroup leader introduced the topic talking about doctors and nurses and the children sang several action songs about being sick, including ‘humpty dumpty’.

When the doll, teddy and dinosaur play began a brochure was handed out, ‘Hospital preparation for pre-schoolers – time well spent’. In amongst the fun I was hoping to convey to the children that when we are sick or hurt, it is not because of something we have done. Also if we are sick, doctors and nurses are there to help us get better and Mums, dads or the person caring for us will be there to give us a hug.

Whilst the children played, parents were reminded that fear of the unknown is an issue for young children and that pre-schoolers need reassurance. When we think of going to hospital, we think about the role of health professionals and may not stop to think about the role of parents. My take home message for parents was that their role is really important too. Parents and carers help their children cope with fear by being calm. Playgroup parents laughed at this point, recognising this is something easier said than done. I showed them two books Help! My child is in hospital and Everybody stay calm.

Before my voice faded into the general hubbub, my final point was that it is important to be informed and not to be afraid to ask if something is not clear. Parents can ask the hospital what resources are available to help prepare. The AWCH website and Dr Angela MacKenzie have many helpful links for parents and carers who want to prepare their children in different medical situations. A special mention was given of the wonderful free app designed for and with young children, “Okee in medical imaging”.

A chat with staff at a local pre-school followed. It was not long after I had arrived when a teacher pointed out the hospital corner, put together because of a child's recent hospital stay. The staff borrowed books to read to their classes and enquired about books for children with special health needs or those who have sick parents.

 One of the most poignant reasons for preparing children for hospital came from a playgroup mum. She shared an experience as a three year old child. She recalled how her parents said she was going on holidays. It was devastating to find this was misheard and that instead, her parents had said she was going to hospital. This became a traumatic experience and hard to get over. I finished the morning with a greater certainty that preparation is time well spent*.

Perhaps the three little ‘ps’ stand for – preparation, playgroup and Peppa pig.

Jillian Rattray

AWCH librarian
http://Library.awch.org.au
July 2015

*Dr Angela MacKenzie encourages parents to do their “homework” and be prepared.

An EA/TEF Story Inside and Out

I will never forget the moment my world turned upside down: on Friday the 13 March 2009.

I was thirty weeks pregnant, my husband was out of town and I was alone in a city I had just moved to.  I was folding laundry when suddenly, I felt something was happening, my water broke. “Please, not now baby!” I pleaded while holding my deflating belly.

Twelve hours later, Castalia’s heart was dangerously slow and I was rushed to the Operating Room for an emergency C-section. Even as a first time mother, I knew very well what a quiet birth meant. I felt numb.

I vividly remember the painfully heavy silence growing in the room, even when I finally found the strength to ask where my baby was. I was laying alone on the operating table, feeling the rhythmic pull of the stitches applied to my vacant womb, preparing myself to be told that my baby was dead.

The next thing I remember is slowly waking up and seeing a figure, a doctor stood by the door. It took a lot of effort to focus on the words he was saying, I was feeling very groggy still. In a detached voice, he announced:  “We suspect that your infant has Esophageal Atresia. She will be transferred to the Children’s Hospital to get evaluated and possibly undergo surgery today. We need you to sign some papers.”

"-Esopha…what? Can you explain what this means in terms that I can understand?”

Just like most people, I had never heard of this GI (gastro-intestinal) birth defect that affects one out of 3500 births. In a nutshell, it means that her esophagus, her food pipe, was not attached to her stomach. In her case, her upper esophagus ended in a pouch while her lower esophagus connected her stomach to her trachea.

I had no idea what that meant for her future or for ours.

EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) kids seem to have widely different journeys that do not simply stop at “getting repaired.” Even if their primary closure is successful, in most cases the esophageal muscles and nerves don’t work properly. It can make eating and drinking difficult or impossible, resulting in random choking episodes, strictures or Gtube feedings.

Furthermore, about half of them, like my daughter, have other birth defects.  Most also have GERD and will need to be on antacid medicine their whole life.  EA/TEF kids tend to get sick more often and stronger than other children but there hasn’t been much research to truly explain why.

They often have tracheomalacia - floppy airways. It can make it hard for them to breathe, especially when they are sick and it gives them a deep barky chronic cough that earns them lots of stares in public.
My resolution for 2015 was: to find a way to raise awareness and money for the condition. To accomplish both, I decided to write a children’s picture book called “An EA/TEF Story Inside and Out” to empower EA/TEF children, educate the public about the condition and offer ways for others to help.

 
It is available on:
http://www.lulu.com/content/paperback-book/an-eatef-story-inside-and-out/16463739 
Or visit www.eatefbooks.com for more information. It is available worldwide in English (American and British Spelling) and in French. Coming soon in Spanish, Italian and Croatian.

Thank you for your support and please help spread the word about the condition.

Vanessa Munsch