What's the story with Kaylas Cleft?

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Anyone following my journey over the past year will know Kayla was born with a cleft palate (but not lip) Many people don’t quite understand what that means, and to be honest I struggled a bit at the beginning too! So I thought a blog would help :)

 

There are many different types of clefts and no two are the same. A baby can be born with a cleft lip, a cleft palate or both a cleft lip and cleft palate. Essentially what a cleft is, is a hole or gap in the area. 

The following stats are taken from (http://www.cleft.ie/?page_id=25) The incidence of cleft lip and/or palate in Ireland is between 1 in 700 and 1 in 1,000 births. Incidence of cleft palate occuring alone is about 1 in 2000 births. More than 70% of babies with cleft lip also have cleft palate. 

Parents who have a child born with a cleft, have a 5% chance of the next born also having a cleft (so a 1 in 20 chance). If a second child is born with a cleft, the likelihood increases further for any subsequent child. 

The chances of a parent who was born with a cleft having a cleft baby is approximately 7 in 100. So Kayla will have roughly a 7% chance of having a baby with a cleft (of course if she chooses to be a parent but we would love lots of grandchildren!). 

 

Types of Cleft Lip

  • Forme fruste unilateral cleft lip
    A subtle cleft on one side of the upper lip, which may appear as a small indentation.

  • Incomplete unilateral cleft lip
    A cleft on one side of the upper lip, which does not extend into the nose.

  • Complete unilateral cleft lip
    A cleft on one side of the upper lip, which extends into the nose.

  • Incomplete bilateral cleft lip
    Clefts on both sides of the upper lip, not extending to the nose.

  • Complete bilateral cleft lip
    Clefts on both sides of the upper lip, extending into the nose.

Types of Cleft Palate

  • Incomplete cleft palate
    A cleft in the back of the mouth in the soft palate.

  • Complete cleft palate
    A cleft affecting the hard and soft parts of the palate. The mouth and nose cavities are exposed to each other.

  • Submucous cleft palate
    A cleft involving the hard and/or soft palate, covered by the mucous membrane lining the roof of the mouth. May be difficult to visualize.

Kayla is linked in with the cleft team in Temple Street. They have been amazing. Big shout out to Jane the cleft nurse specialist who takes families under her wing and walks the journey with them. She gives us so much time to ask any questions we may have and checks in regularly to see how Kayla is doing.


 

In Ireland, the cleft teams grade the palate or lip cleft from 0-3. 0 being very mild and 3 the most sever. Kayla has a grade 3 cleft palate. She has a complete cleft palate, but instead of just being a gap or a hole Kayla is missing all of her palate (hard and soft)

kayla palate 1.jpg
kayla palate 2.jpg


 

 


 

Kayla also has a condition called Pierre Robin sequence (or syndrome) PRS for short. This is a condition in which babies are born with a smaller than normal lower jaw, a tongue that is small and bunched which often falls back in the throat, and difficulty breathing. It is present at birth but not always detected in pregnancy ultrasounds. Most babies with PRS have a U shaped cleft palate like Kayla. Again the team will grade PRS 0-3 and Kayla scored a 0, as luckily she does not have many issues with her airways. Kayla does well once she is on her side or raised. Another positive is that nature gave her a helping hand with a tight posterior and anterior tongue tie to hold her tongue in place, so her tongue does not flop back to block her airways (who would have thought it? A helpful tongue tie!!)


 

Other common issues in babies/children with PRS are problems with their eyes (Stickler Syndrome), problems with their inner ears and dental issues. Kayla will be under different teams for each and so far they have been wonderful.


 

Kayla will have her first surgery to create a soft palate when she is around 9 months. This will hopefully help with her speech development. She will most likely be 3 years old before her palate is completely closed but for now it seems the only long term issue she will have is a speech delay – which she will catch up on by the time she is 10 years or so. So while her first few years of life will be hard, with surgeries and hospital appointments it is something that won’t hold her back and she can put behind her!

 

I hope this blog helps to explain things a little? Please feel free to ask questions :)

Again thank you to everyone for the love and support since Kayla was born xx

kayla 5 months.jpg


 

If you or someone you know has a baby with a cleft or PRS these are helpful resources:

Websites:

http://www.cleft.ie/

https://www.clapa.com/

www.cleftlipandpalatebreastfeeding.com

https://www.breastfeeding.ie/Resources/Publications/ The booklet I co created "Breastfeeding and Expressing for your preterm or sick baby" has lots of information on getting off to a good start, maintaining your milk supply, storing milk, skin to skin and more. It is available free to download or order. All Irish maternity units should have copies also. 

The Australian Breastfeeding Association (ABA) has two booklets (both e-booklet -released during 2017 and hard copy)  The cleft breastfeeding booklet: https://goo.gl/ZnoFqc has information about breastfeeding - and expressed breast milk feeding, lactation aids, type of feeding methods including - cup/spoon/supply lines/ bottles/teats. As well as some of the experiences surrounding feeding from families.  The second booklet is all about expressing and storing breastmilk: https://goo.gl/ft7gDp. 

 

Facebook pages: 

cleft lip & palate association of ireland

Cleft Lip And Palate Association

Cleft Lip and Palate Breastfeeding Support Group

 

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What is the Fourth Trimester?

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What is The Fourth Trimester?

Imagine what the third trimester of pregnancy would be like for a baby: tightly cocooned in a warm, dark, comforting place. There are no hunger pains or thirst, no need to pass painful wind, no strange smells, no feeling the hot or cold — just a perfect environment tailor made for a baby.

baby pregnancy

I’m sure you can also imagine suddenly being born into a world with of all these things can be quite a rude shock!

A new baby isn’t born being able to fend for themselves and still has much developing to do – they can’t escape if they sense danger or fear, go and find mum or dad for security or a cuddle, nor can a baby chase mum for a feed whenever hunger or thirst calls… they completely rely on us for every single need.

A gentle adjustment into their new world in the form of a fourth trimester (which is named that way in order to be perceived as an extension of the third trimester) can make a huge difference to how baby feels and how mum and dad cope with parenthood.

Babies cry because it is their only means to alert their parents that they have a need to be met (and they will not stop crying until it is met), which can in turn make parent’s self esteem and confidence plummet if nothing seems to work. This is because they start wondering what they are doing wrong and if they are useless parents (they’re not).

Giving your baby a fourth trimester can make for such a more enjoyable, soothing time for all involved – so how can you give your baby a fourth trimester? Here are some simple ways to recreate womb life.

  • Use a sling/wrap

Baby wearing can be a life saver in the early days. Using a sling can recreate several conditions from when baby was in the womb. Feeling tightly supported all over, close to mum’s heartbeat, warm and cosy. Both parents can use a sling to offer comfort to baby and strengthen your bond.

Make sure you choose a safe and suitable baby carrier – www.babywearingireland.ieis a great source of information. You can even get a sling consultant out to your house!

baby sling wrap

  • Skin to skin!

Whether you are breast or formula feeding, skin to skin is a great way to increase bonding with your baby. Skin to skin contact offers the following benefits for your baby at birth (and beyond):

  • Regulates his body temperature better even than in an incubator

  • Maintains his heart rate, respiratory rate and blood pressure normal

  • Has stable blood sugar

  • Feels safe and calm so is less likely to cry

  • Receives good bacteria from your body to promote good gut bacteria in baby and boost immune system.

  • Is more likely to breastfeed exclusively and breastfeed longer

  • Baby is more likely to latch on

  • Baby is more likely to latch on well

  • Will indicate to his mother when he is ready to feed

 

  • Bath time!

Many babies absolutely love being in a nice warm bath. Some babies may not like a bath at first, as they don’t enjoy the air or cold on their skin as their clothes come off, but they soon grow to love them! If you’re not confident on how to hold a baby in a bath, you can ask your midwife, doula or PHN for a demonstration – or you can just jump in the bath with your baby for added skin to skin benefits. The soothing water surrounding your baby creates an environment similar to what he or she would have been used to in the womb.

Dim any bright lights and jump into that nice warm bath together – even dad can do this one so he can enjoy bonding time with his baby too.

  • Bed Sharing or Co-Sleeping

Just like with cot sleeping, there are also safe co-sleeping guidelines. Both sleeping methods have risks if not practiced sensibly. Le Leche League have a 7 step guideline to safe co-sleeping. You can find the information here http://www.llli.org/sweetsleepbook/thesafesleepseven 

By bed sharing or co-sleeping (which includes specially designed cots which attach to the side of your bed, to give baby their own safe space), your baby can sleep in safety knowing that mum is close by. He can smell you and even touch you, without insecurity. Its also a great way to make sure mum gets her much needed rest. 

We’ve all heard the saying ‘sleep when baby sleeps’.

Especially in the fourth trimester, focus only on what you and your baby need – and it’ll make such a difference to how you feel when you’ve had more sleep. Sleep deprivation is one of the leading contributors to anxiety and depression in new mothers, so take care of yourself and enjoy those sleepy cuddles.

 

  • Feed on demand for breast and bottle fed babies.

Offer The Breast If Baby Wants It : Breastfeeding is something your baby will become familiar with very quickly, from the moment she is born. It provides her with a great sense of comfort. She will feed often, especially in the early weeks, as she tries to establish your supply. It is important to follow your baby’s lead to allow her to create a milk supply to meet her individual needs. 

There are lots of places to get support with breastfeeding. (Cuidiu, La Leche League, Friends of Breastfeeding, Postpartum doulas) or the most qualified experts in breastfeeding – IBCLC’s (International Board Certified Lactation Consultants). 

You can find breastfeeding support in the following places:

 

If you choose to bottle feed remember your baby has been fed constantly throughout pregnancy. A three or four hour routine can be difficult for a new baby to adjust to. Also it is helpful to remember that a new born tummy is the size of a small marble/malteser and so they thrive on little and often. Paced bottle feeding can ensure your baby takes as much food as they need, without being forced to drink more to ‘finish the bottle’ Trust your baby to take what they need and this will help to avoid lots of spit up and tummy pain.

You can find more information here: http://kellymom.com/bf/pumpingmoms/feeding-tools/bottle-feeding/ 

newborn baby cuddles

 

  • Getting Out and About

Once you have recovered from birth it is important to try to get out and about. Every baby is different so trial and error will find the best way for you. Lots of babies love the motion of the car but some do not like the car seat so this can cause you stress. Some babies love the buggy for the ride, others would rather be worn or in a parent’s safe arms. Make a date with a friend to meet for a cupa somewhere or just take a gentle stroll around the block. The fresh air will help to lift your mood and may help baby to sleep.

  • Coping With An Attached Baby

You may be reading this thinking it all sounds great, but it seems a little exhausting. Yes, it can be sometimes. But always remember: nothing is permanent, everything is temporary. Even when it feels like it’s going to last forever — it’s not.

Remember ‘This too shall pass’.

Sleep deprivation and discomfort is part of the job of being a parent, but it can be made much easier by:

  • Sharing the load where possible – accept and ask for all the help you can

  • Make sure your partner spends time settling baby too (he/she needs to learn – and baby will learn how daddy/mammy does it!)

  • Seek out a postpartum doula if you can afford it

  • Making sure you get a break/time out. Even a trip to the supermarket, coffee shop or 5 minutes in the garden

  • Check your expectations. Are you expecting too much from yourself and/or your baby?

Your baby does not behave in these way to manipulate or annoy you, but to teach you what he likes and needs – and what makes him feel most safe and loved. By being open to the lesson and remembering that ‘this too will pass’ (a great mantra when things get a little tough) you’ll be an expert on your baby in no time.

Hang in there – it WILL get easier. Savour the good times & breathe through the tough ones. Take lots of photos ☺

 

Doula Jen   x

 

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Power Pumping

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Increasing Breast Milk Supply-Power Pumping

If you are exclusively expressing for your baby, for any reason it is important to replicate normal infant growth spurts. Baby’s who feed at the breast will naturally increase their feeds when they are due a developmental leap or growth spurt. However, a pump cannot recognise these millstones, so you will need to mimic your baby. This triggers an increased release of prolactin from the pituitary gland – the ‘make more milk!’ message.

Because breasts work on the principle of supply and demand, using a breast pump is often recommended once your milk has come in (around day 2 or 3 after birth). Before this it is best to use hand expression, as colostrum is made is small quantities and is thicker – thus harder to bring out with the manual pump. Regular pumping delivers to the brain a ‘make more milk!’ message and can be very effective in increasing supply. However despite regular pumping sessions many women do not see results as quickly or as effectively as they had hoped. Enter power pumping!

How do I power pump?

Firstly it is important to set yourself up with the right equipment. Ensure you are using a hospital grade, double breast pump. Most Irish hospitals use the Medela Symphony. Ask a member of staff to check that the flange (bit that goes over your nipple) is the correct fit. The standard size is 24 but many Irish women will need the 27. Get into a comfortable position, with your bottle of water, a snack and items from your baby (like photos, or something that smells of them)

Power pumping is not a replacement for regular breast pumping to increase supply. Instead, power pumping is intended to boost your progress by replacing one regular pumping session with a strategically designed alternative. It works by repeatedly emptying the breast, signalling the body to make more milk, more quickly. This is mimicking a baby’s ‘cluster feeding’, many do this in the evening time.

To power pump, pick one hour each day or night (eg. 8pm every night) and use the following pumping pattern:

Always begin with a good breast massage. Some coconut oil can help to minimise friction.

  1. Pump for 20 minutes; then rest 10 minutes, massaging again.

  2. Pump for another 10 minutes; rest for 10 minutes, massaging again.

  3. Pump again for 10 minutes; finish.

This means you will have 40 minutes of active pumping in a 60 minute period. During the rest phase, massage your breast, look at photographs of your baby, smell an item that has been with your baby and relax.

You can watch a movie or read a book if it helps you to relax, do not focus on the pump and how much milk is coming out. This is not the aim. You are trying to trigger your body to make more milk tomorrow. You are not aiming for increased milk volume today. Try to view it as an hour each evening for you to put your feet up, have a nice treat and cup of tea and maybe watch a TV show. 

Power Pumping.jpg
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Moved to New Blog Where do pumping mothers fit in?

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JenKaylaPumping.JPG

Anyone following my story over the last year knows my gorgeous baby Kayla Rose was born in March with an undiagnosed cleft palate. She has a very severe cleft, missing all of the roof of her mouth, hard and soft palate. This meant separation at birth, a SCBU stay and set me on a new journey of full time pumping. (You can find my blogs and videos on DoulaCare Ireland social media & on our website under Jen's Pregnancy Diary

I am 3 months into my pumping journey now and while I have gotten over my loathing of the pump, I am still struggling to find my “place” in mothering labels. Many a nurse and doctor have been made to feel awkward when they ask how Kaylas feeding is going, as I erupt into a blubbering mess about not being able to breastfeed. Paul has started to put his arm around me when they start running through the questions, in anticipation of the dreaded question.

At all of Kayla's hospital appointments I am asked “breast or bottle fed?” I mean, after my first few emotional break downs I would have thought they’d have it written on her file not to ask me this any more...but alas they break it out each time. I can now calmly say “she is breast milk fed in a bottle” (I tend to follow it up with a “she can’t feed at the breast because of her cleft” like I am making excuses to them or something. Just so they know it’s not that I don’t want to breastfeed, because I really really do.)

“It has me thinking where do pumping mothers fit in? Are we breast feeders or bottle feeders? Or do we occupy a status all on our own in some kind of middle ground? ”

Anyway, I digress. It has me thinking where do pumping mothers fit in? Are we breast feeders or bottle feeders? Or do we occupy a status all on our own in some kind of middle ground? 

I have worked with many mothers who chosen to pump for different reasons and were 100% happy with that choice and thrived on the set up. I am pumping out of necessity (if you haven’t already got that) so perhaps that is why I am writing this blog. To hear others point of view on the topic and open the discussion.

I have always been a breastfeeder. I am proud of that and enjoyed every aspect and the beautiful bond. I now find I am not sure of my identity any more. I almost want to write “containing breast milk” on Kaylas bottles for fear of breastfeeding mothers judging me. This is of course ridiculous as I never once think anything bad of mothers who bottle feed (formula or breast milk) as it is their choice for their baby. It is a totally idiotic thought process and yet a real one for me right now.

One thing I will say is that pumping is a full time job, the washing and sterilising is unreal and you still have to feed baby the milk in the bottle too. It is no joke. I have supported hundreds of pumping mothers over the years and have always admired them for their dedication and hard work but living it has opened my eyes to the incredible emotional journey and physical exhaustion that comes with it. I am so proud of myself (cringe I know) for getting this far and giving Kayla 100% breast milk to date. While it is not the feeding journey I longed for, it is ours - and we are finding our way. My heart still longs to breast feed but I love cuddling her into me and gazing into her eyes while she has her bottle. Feeling her little body tucked into mine and knowing she is getting all the goodness of my milk – that is tailored to her needs. 

So I open up the discussion. Where do us pumping mothers fit in? Remember to be kind to all feeding choices – you never know the journey that family is on or why they chose their feeding method.