Newborns with cleft lip and palate: A palatable resource lives on!

(l-r) Suzanne Dyke, nurse coordinator for the cleft lip, palate and craniofacial team, and Anne Clift, dental manager at the Janeway Children's Health and Rehabilitation Centre with Eastern Health.

(l-r) Suzanne Dyke, nurse coordinator for the cleft lip, palate and craniofacial team, and Anne Clift, dental manager at the Janeway Children’s Health and Rehabilitation Centre with Eastern Health.

Five years later

It was close to five years ago that Anne Clift and Suzanne Dyke of the Janeway Cleft Lip, Palate and Craniofacial Team accepted a $10,000 Lighthouse Grant to develop, implement and evaluate a resource for families of newborns with cleft lip and palate.

We’re proud to report that the grant lives on!

In 2009, Anne and Suzanne developed, “You and your Baby: Newborns with cleft lip and palate,” a resource for health care professionals and families that addresses topics such as feeding your baby, monitoring weight gain, as well as surgery procedures.

The “binder,” as it’s often referred, is rich in photography. It features photos of babies who have gone through the clinic, including several pictures of babies with cleft lip and/or palate before and after surgery takes place.

The idea that grew

Like the children’s story book, ‘The Little Engine That Could,’ the binder has become ‘The Little Idea That Grew.’ Anne and Suzanne initially envisioned a resource for birthing hospitals in the province, to help families in the first few days following the birth of an infant with cleft lip and/or palate – more of a pamphlet, really.

However, through the generosity and efforts of numerous people, this pair ended up with a unique and enduring resource.

The binder is not only used for families of newborns. It is also routinely used for families whose baby has been diagnosed prenatally – before birth – with a cleft lip and/or palate.

Betty Caines is a prime example. When Betty went for her first ultrasound check-up at 18 weeks pregnant, she knew something was wrong the minute the technician went to get the doctor. As the health care team kept on circling around the baby’s face, Betty immediately knew her baby had a cleft lip. “It was very upsetting at first. I cried a lot, Betty recalls. “And not knowing the extent of the defect made it worse.”

After the initial shock, Betty and her husband prepared for the worst. They decided to get genetics tests done, and were later relieved to find out the cleft was an isolated incident.

Shortly thereafter, the Caines met with Suzanne. It was then they first learned about the resource binder.

Looking at the photos and the journey of other babies just like theirs gave the Caines hope. “It was frightening at first to look at all the pictures. My husband and I took it home and read it. It was reassuring to know there are a lot of more people out there going through the same experience as us. It helped us to accept it more,” Betty recalls.

Newborn Benjamin Caines, pre-surgery.

Newborn Benjamin Caines, pre-surgery.

The binder also helped Betty and her husband prepare for what was yet to come. “We didn’t know how many surgeries our baby had to have, if he was going to be in pain, or how we would care for him,” Betty says.

Benjamin Caines at two months old, pre-surgery.

Benjamin Caines at two months old, pre-surgery.

Now, Benjamin – the Caines’ baby – is close to eight months old. He is a wonderful, active and healthy little baby. His first surgery, which was a success, took place in late May. Benjamin will have another surgery at age one to repair his palate, with a follow-up procedure at eight years of age.

“There is light at the end of the tunnel. Everybody tells you everything will be OK – but I see it all now. Having been through this experience, I now believe it.” Betty adds.

(l-r) Benjamin Caines at six and seven months old respectively, post-surgery.

(l-r) Benjamin Caines at six and seven months old respectively, post-surgery.

The resource binder has also proved helpful for adoptive parents and foster parents of babies with a cleft of lip and/or palate, as well as for parents from all over the province.

… and keeps on growing

As other health professionals became aware of the binder, Anne and Suzanne received many requests to do presentations to nursing, medical and dental groups about the project and caring for the newborn with cleft lip and palate. Some groups, such as the Centre for Nursing Studies (CNS), enhanced the cleft lip and palate part of their curriculum.

In the spring of 2011, after Suzanne and Anne presented a poster on the development of the resource binder at a nursing research conference, Lori Robbins and Marlene Browne, nurse educators with the CNS, asked Suzanne and Anne if they would be willing to deliver a guest lecture at the Centre. And they did!

The lecture was so successful that the Centre has invited them every year since.

“We taught this component based on textbooks and our limited experience. The content was accurate, but we could not deliver it with the emotional, true-to-life accuracy that this defect deserves,” comments Lori.

IMG_NewbornsCleftLipPaleteResourceBinderMarlene agrees: “The binder was inclusive and impressive, and we knew it was a potential gold mine for students. This resource, coupled with Suzanne and Anne’s expertise in caring for children with facial differences has been helpful in teaching students current practice for this particular defect.”

“Students enjoy and value this lecture especially the pictures of children in our own province depicted in the binder, as it really bring this topic to life.”

“Students could never get that from a traditional lecture. Suzanne and Anne do a thorough job explaining the many facets of care required for children with cleft lip and palate.”

Another beauty of the binder is the ease with which it can be updated. The binder is large enough that many more pages can be added. If there is a change practice, for example, the information can be removed and replaced. The resource binder is a living document people can adapt to their particular needs.

Suzanne and Anne also presented their work to other Eastern Health departments, including the surgery and perioperative programs.

Helping families

A digital version of the binder is available on Eastern Health’s web site, as well as on the American Cleft Palate Association’s web site and the Cleft And thanks to technology, we have been able to reach families far beyond our province, and even our country.

The pair has been contacted directly by health professionals from around the world too! Suzanne was able, for example, to assist a social worker from Wisconsin, USA, who was looking for information on cleft palate feeding bottles, and get her in touch with Eastern Health’s bottles’ provider.

Making a difference

Prior to the binder, this duo carried an envelope of pictures of babies with cleft lip and palate, provided by the babies’ parents, in their pocket. They also accessed a lot of information from About Face and the American Cleft Palate Association. But they were never able to find a resource that would suit their needs. More importantly, Suzanne and Anne wanted to feature babies from our province whose surgeries had been completed by our surgeons. There was even less information available in French.

Anne and Suzanne’s vision, to this day, was to help others. With the support of Eastern Health, they have been able to do just that!

Looking back, it is great to see the babies that appear in the binder are now grown and in school.

As Anne prepares to retire from Eastern Health, she reflects on the binder, the talks, the trips, the education sessions – all the work that went into it. Anne is happy to look back and realize her work, and that of her colleague, has paid off. Indeed, the binder lives on.

This story was written by Anne Clift, Dental Manager at the Janeway Children’s Rehabilitation Hospital, and Melisa Valverde, Digital Communications Specialist with Eastern Health.

One response to “Newborns with cleft lip and palate: A palatable resource lives on!

  1. Such wonderful, valuable work!
    Such an innovative team of dedicated people. EH should be proud!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s