Word of Mouth November 2019 - Cleft New Zealand Inc Newsletter

Welcome to our last newsletter for 2019.

Chairperson's Report

Time flies, it is hard to believe that it is already November and we are organising Christmas parties! I thoroughly recommend you check out the nearest Christmas party to you, as they are a great way to meet up with other families in a relaxed setting, if relaxed is possible with kids!

Its been another busy year for Cleft NZ as we try to continually build on the things that we do around the country. I must thank the rest of the board and coffee coordinators around the country, for their efforts in making this an organisation to be proud of.

Its been great to see the culmination of months of effort by the team in organising Welcome Packs for all new cleft babies born in NZ, and furthering awareness and education among medical professionals on cleft-related matters. You can read more below on these two massive achievements.

We are continuing to work towards new events as well. We have a Big Day Out planned for teens in Auckland in the new year, which should be a lot of fun as we work towards running a nationwide teen camp for the first time in 5 years. Your support of these events is greatly appreciated.

Planning is also underway for Cleft Awareness week in 2020, which runs from 4-10 May 2020. We'll update you in the New Year as plans are formalised, however if you want to organise something on a local level that would be great, and we will help you in any way that we can.

The update of the Blue Book is ongoing, as we try to ensure that it provides the most up to date and relevant information. I always find the most interesting part of the Blue Book to be the personal stories and experiences, with that in mind if you would like to share your cleft story as a parent or child, we would love to get some submissions that we could include in the new edition.

Indeed if you have any ideas for events/services that you think might be helpful for Cleft NZ to offer, we'd love to hear from you. Please email info@cleft.org.nz.


Andrew Acton-Adams, Chairperson

Christmas Parties

Christmas Parties are coming up in Auckland, Wellington and Christchurch. A big thank you to those who have organised them. Details will be on our Facebook page, or you can email info@cleft.org.nz.

Dunedin Marathon Fundraising Walk and Welcome Packs - an update from Jemma Cookson (Board Member, Dunedin)

On September 1st, myself and three family members decided to walk for Cleft New Zealand in the Dunedin Marathon 10km walk. You may have seen our Givealittle page doing the rounds for the months leading up to the walk. I'm pleased to announce we raised a total of $380 for Cleft NZ and got the "Cleft NZ" name out there. We had plenty of interest from the public asking what our chosen charity supports, which led to some great conversations about awareness and acceptance. All in all a great day! We want to thank everyone who donated and took the time to give us words of encouragement in our efforts.

Jemma (far left) with family.

The money raised will go towards launching our new project that has been in the pipeline for some time now - 'Welcome Packs' for new babies born with clefts. Each 'Welcome Pack' will come with a personalised bear with a cleft scar to match their intended recipient, alongside some other goodies including Cleft NZ gear. All cleft babies born in New Zealand on or after 1 November 2019 are eligible for a pack - you can apply for your pack on our website using this link: https://www.cleft.org.nz/welcome-pack-request-form/

Sample Welcome Pack

Coinn Conference & National Cleft Study Day - an update from Lisa Kennedy (Board Member, Bay of Plenty)

5-8 May 2019 COINN Conference, Auckland.

Cleft New Zealand Inc exhibited at the COINN (Conference of International Neonatal Nurses), held in Auckland, on 5-8th May 2019. I represented Cleft NZ and there was great interest from the neonatal nurse delegates at the conference. Delegates were able to ask questions about cleft lip and palate and learn about the support Cleft NZ provides our cleft families and health professionals. Delegates also expressed interest in our upcoming National Cleft Study Day (see below). This is the second conference Cleft NZ has attended in the past year. Last year we attended the Bi-Annual Midwifery Conference. By attending conferences, Cleft NZ are able to inform health professionals, who come into contact with cleft families, about our support.

12th October 2019 National Cleft Study Day - Rotorua

The National Cleft Study Day held on the 12th of October at Rotorua was an outstanding success. Midwives, nurses, lactation consultants and speech & language therapists converged for our first National Cleft Study Day. Megan Sanders, Cleft Specialist Nurse (Middlemore), Lynne Walker, Cleft Specialist Nurse (Waikato), Arthur Yang, Plastics Consultant (Waikato), Alison Farnell, Lactation Consultant (Middlemore), Bryony Ford, Speech & Language Therapist (Hutt), Louise Ayrey, National Cleft Study (University of Auckland) and Lisa Kennedy, midwife (Rotorua) gave presentations on aspects of cleft care from the antenatal period to early adult. The focus was around how best to support families when a cleft is diagnosed & to ensure that health professionals know how to diagnose a cleft and care for a cleft child & whanau, especially in the first few days after birth. I conceptualised the idea of creating a cleft advocate programme to ensure that care across the country was standardised.

Delegates travelled from Northland, Invercargill, Gisborne & Hutt and everywhere in between. The event was supported by Cleft New Zealand, where I am on the board as the Clinical Advisor. Delegates are now motivated to return to their DHB's, to create resource boxes and train their colleagues.

Lisa Kennedy speaking at the National Cleft Study Day

Introduction to Michelle Shand - new Cleft Co-ordinator (Christchurch)

Hi, my name is Michelle Shand and I started as the Cleft Coordinator in Christchurch in April. Prior to being part of this amazing team, I have worked as a Registered Nurse in paediatrics for the last 15 years. Most of this time was working in Ward 22 and the Paediatric High Dependency Unit, so I will have cared for many of the children who had their cleft surgeries done over this time. Since starting as Cleft Coordinator, I have been inspired by the passion and dedication of all of the clinicians in our cleft team, and I feel excited to be part of it.

I’m a mum of two boys aged 2 and 5, so my home life is full of noise, mess and fun (and tantrums). Being a parent can be a hard job at the best of times, but being the parent of a child with a cleft has even more challenges. It has been an honour to meet so many families so far that have shown me how determined and resilient you can be and what awesome families you are bringing up.

I love working with children and families and I hope to do whatever I can to make your cleft journey as smooth as possible. I am your first point of call if you have any queries or worries, and can point you in the right direction if you need help from someone else. I work Mondays, Thursdays and Fridays 9am – 2.30pm. Email: michelle.shand@cdhb.health.nz Mobile: 021 589 651 Phone: 03 364 1974.

Introduction to Genevieve Boyer - new Board Member (Wellington)

I am an ex-registered nurse, now full-time diabetes product specialist, looking after the lower north island of New Zealand. I live in Wellington with my husband and two daughters.

My husband was born with a cleft palate only and our youngest was born with a bilateral cleft palate only. Since then, our daughter has also been diagnosed with Van der Woude syndrome. At the start, we both relied on the “blue book”, the Cleft NZ website and the closed Facebook group page. I also occasionally went to coffee groups.

Because of this support and ongoing cleft care that my daughter requires, I now want to help support Cleft NZ in any way that I can. I can be contacted by email at genevieve@cleft.org.nz.

Speech Matters by Akshat Shah

We received some great questions for Akshat, which he has answered below. Have a speech related question for Akshat? Please email it to info@cleft.org.nz and Akshat will do his best to answer it in the next newsletter (space and time permitting).

Q: Is there anything I can do before my baby's first surgery to help with speech and language development later?

A: A cleft of the lip is typically repaired between 3 to 5 months of age. The priority before this surgery is to make sure your baby is growing well. They will not be producing any sounds or words yet, but need to big and healthy enough to undergo the surgery.

A cleft of the palate will be repaired as early as 9 to 12 months of age (though some may be a bit later). Along with making sure they’re growing well, you can do many things to help their communication develop! Some of these include reading to them, singing songs, and lots of playful interactions. You can show them how the “m” and “b” sounds are made with the lips, and the “d” sound is made with the tongue. They may not be able to make the sound accurately, but it’s very important to keep showing them (not correcting them!). Using lots of variety in your interactions will also help develop their communication skills.

Q: My four year old child with a cleft lip and palate has had two sets of grommets. Is this the reason their speech is unclear?

A: Hearing and speech go hand in hand – we listen to sounds and copy them. For example, if children can’t hear certain sounds they can’t copy them as easily, or if they hear muffled sounds they are more likely to say those sounds. If your child has needed grommets, it means they had some difficulty with fluid in their middle ear and needed it drained. This fluid will have affected their hearing and, therefore, ability to copy speech sounds accurately. Multiple sets of grommets means they may have had this difficulty for longer.

If the hearing difficulties have been resolved they can start to hear how the accurate sounds are supposed to sound, and can begin modifying their own speech. Support from their Speech-language Therapist can be very beneficial in making their speech sounds more accurate.

Q: What is the difference between a DHB SLT and one who works for the Ministry of Education team? Do they do the same work? And, how can they help my child?

A Speech-language Therapist based on a Regional Cleft Team (usually at the DHB) has had further training in cleft and VPI related speech disorders, and works in collaboration with the community based SLT (who may see children with a wide variety of feeding and/or communication difficulties). They may include a SLT from the Ministry of Education (if your child is over 3), Ministry of Health (Child Development Team, if your child is under 3), or a private practitioner. The Child Development Team support early feeding and communication skills, and the Ministry of Education SLTs support the development of speech and language skills through to early school years.

All the SLTs work together with your whanau; the Cleft SLT is usually based at the hospital and is not able to visit homes, while the community based SLTs work primarily in homes and educational centres. This collaboration allows the Cleft SLT to support you and your SLT with assessment, developing goals, and advice and guidance on the intervention your child may need. The community based SLT typically implements this programme, and provides feedback to the cleft team. Both SLTs are highly professional with their own strengths and skills to support you and your child using this collaborative model. When possible, both the Cleft Team and Community SLTs can provide a joint session with the whanau to share their skills and knowledge.

Akshat Shah,Speech Language Therapist MNZSTA, BSLT, MSc (Speech Science).

Akshat is an experienced Speech-Language Therapist based in Northland. He has previously been part of a regional Cleft Lip and Palate Team. He works privately with clients in Auckland and Whangarei, and can be contacted on akshat@outlook.co.nz for an appointment.

Cleft Lip and Palate Gene-Environment Study - update from Louise Ayrey (Project Manager, University of Auckland)

We appreciate the time it takes for families to participate in our study, so we are thrilled to have secured funding for Koha. We can now offer our participants a $30 MTA or Pak’n Save voucher. It’s a small token – but it is nice to acknowledge your support in some way.

If you have already been interviewed, you will know that our interviewers are parents of, or have a connection to Cleft Lip and/Palate. We also recruit health professionals such as nurses or midwives. We are still looking for interviewers in Southland, Nelson/Marlborough region and Northland. If you know of anyone that might be interested, please give me a call on 021 318052.