breastfeeding | Breast-milk feeding a cleft palate baby – Jayne and Sienna’s story

Breast-milk feeding a cleft palate baby – Jayne and Sienna’s story

Posted on September 15, 2009
Filed under: Cleft lip/palate, Exclusive expressing, Expressing, Latch problems

This article in a slightly abridged form first appeared in Nurture magazine’s Winter edition 2009. It’s taken a long time to write (4 + years!) and was hard to be honest, due to the emotions I experienced being unable to breastfeed my daughter the ‘traditional’ way. I hope this is of interest to someone, and may even inspire someone else to do similar. Breast Milk is a baby’s birth right. While I have nothing but sympathy for women unable to breastfeed, and would never ‘blame’ anyone for feeling exclusive expressing is too difficult-I also want to reassure some for whom exclusive expressing may be an option that it is very worthwhile and while not easy at times, very rewarding and perhaps, less difficult than some might imagine.

Warning-this is LONG!!
Just as I was due to give birth to my second child, my first born was aged 3 years and 8 months-and was still breastfeeding morning and night. Liam and I had weathered the trials of the early days of breastfeeding together, and had come out victorious. The fact that I was still breastfeeding, with no plans to wean him at almost age 4 is due to my belief in the benefits of breast milk for toddlers and older children. It’s safe to say I was and am quite a lactavist. And it puzzled me why others didn’t always feel the same way. Sure breastfeeding was sometimes hard-but ultimately rewarding. I had little understanding about the reasons why some women couldn’t breast-feed-really there wasn’t all that much to it was there?
So while I was anxious about other issues surrounding the imminent birth and arrival of my daughter, breastfeeding her wasn’t something I anticipated having any problem with at all. In the early hours following her birth, she suckled a few times half heartedly, but soon gave up. A highly alert baby from the very second her head pushed out into the world, Sienna seemed more interested in observing those around her than in feeding. So the fact she didn’t seem to feed nor attach properly for several hours didn’t concern either the midwives or me. She was probably both tired from a difficult labour, and not all that interested.
Eventually though, hunger go the better of her, and her interest in feeding was piqued by the juicy colostrum on offer. She still couldn’t seem to get a proper ‘grip’ and after a few minutes gave up. I still wasn’t concerned-after all it had taken weeks for Liam to learn to attach. However, a maternity ward nurse noticed something that had pretty much not even crossed my radar yet-the fact that milk was coming out of Sienna’s nose. She informed me she was just taking my baby off for a couple of minutes to examine her, and would bring her back very soon.
Of course, this immediately set alarm bells ringing. I tried to stay calm-but internally I was panicking-why would they take her away like that? I’d had one baby already, I knew that wasn’t usual. The negative voices in my head battled with the voices of reason, alternately screaming ‘something is very wrong!’ and ‘It’s nothing, she’s probably just checking for jaundice or something else normal like that’. When Sienna was returned 5 or so minutes later, by the nurse, the panic levels had risen a notch or 10. However the nurse was matter of fact. “Sorry to worry you, your daughter is fine-but I just needed to check something I suspected-and it turns out I was right. Your baby has a cleft palate-she has a hole in the roof of her mouth. It’s ok, it’s easily fixed these days by surgery. But she isn’t able to get the vacuum seal required to breast feed, so she’ll need to be bottle fed. We’ll go get the equipment and show you”.
I was gobsmacked. In 5 short minutes the relatively uncomplicated existence I had foreseen bonding with my newborn baby, snuggling up in bed to breastfeed and getting to know each other had forever been altered by the utterance of those 6 words ‘she’ll have to be bottle-fed’. Just like that-so matter of fact, and yet so devastating. I thought stupidly, “But I’m a passionate breast feeder! I can’t bottle feed!” It seemed inconceivable. I knew at the back of my mind I ought to be grateful it was nothing too bad- this thing after all could be fixed. I knew nothing about clefts, and the fear and uncertainty about the whole medical side of that especially the idea of my baby facing surgery would come later. At that moment however, all I could think was that they were wrong-I refused to bottle feed, that’s not who I am!
After a few minutes discussion with the hospital staff however, I soon realised that if I wanted my baby to thrive it was in fact going to be necessary to bottle feed her. Babies with cleft palates usually cannot attach to breastfeed, because due to the air escaping out the top of their mouth where the cleft is, they are unable to form the airtight seal required to form the action. So really there was only one thing to say; “Ok then. I need a breast pump”. Because I had functioning, lactating breasts-and as long as I had functioning boobies, my baby would have breast milk. I gave strict instructions that absolutely NO formula was to pass her lips. I think my expression and general demeanour was such that no one in that room dared to argue! Instead, a lactation consultant armed with blue hospital issue Medela pump was despatched to my room immediately, and so began the process of learning to express full time for my newborn daughter.
Sitting in the nursery every couple of hours (when the portable pump wasn’t available) attached to a pump that looked like something out of a 1800s steam train engine, trying to stimulate the let down reflex in such a completely artificial environment and manner was a surreal experience. I am sure the nurses thought me odd insisting on having Sienna in her plastic cradle next to me at all times, rather than lined up with all the other nursery babies. Aside from wanting her close because I am an attached parent, having her to look at, and imagine she was really suckling at my breast (rather than the sterile, inanimate pump) was the best way to stimulate letdown. During these first few hours and days I felt sadness creep in at times, but I was determined not to let it take over. I just couldn’t afford to feel that too much; to allow this to defeat my resolve to feed my child exclusive breast milk, as I believed was her birthright. I was so lucky to have lovely supportive midwives and a LC to help me at this time. During the first day of expressing, they brought the pump to me for every feed, because I’d had a post partum haemorrhage requiring blood transfusion and couldn’t get out of bed. The LC spent hours with me, and gave me a calendar from her office with a picture of the Italian town Siena on it, because of my daughter’s name. Small kindnesses like this made it much easier to cope with the challenges of full time pumping. Friends, family and my independent midwife came and visited and brought me information printed from the internet about cleft palates and breastfeeding. They said it was OK to be sad I couldn’t breastfeed her. But I buried that feeling down deep, because I didn’t want to feel it. I was completely scared of falling in a heap and succumbing again to post natal depression as I had in the weeks after my son was born. I just had to make this work-it was as simple as that.
After coming home from the hospital my milk came in full force, and I was expressing at least 250 mls per breast each time. This was immensely satisfying. Despite the annoyance factor of having to get out the pump, wash and sterilise bottles instead of just putting my newborn on the breast I loved watching that gorgeous white-yellow milk flow into the bottles. I loved stocking the fridge up with bottles, and I loved bottle-feeding my baby staring into her eyes, in my arms or in the sling, just as if I were breastfeeding. I was fortunate to have a lovely MCHN and LC from the local MCHC come out, who were fully supportive, even pro attachment parenting and gave me loads of praise and encouragement to keep going with the expressing. The only dodgy bit of advice I ever received was from a hospital midwife on a home visit, who told me I was producing too much milk-she said my body ‘thought it was feeding twins’ and advised me to increase the amount of time in between expressings. Just as stupidly, I followed this advice. Of course my supply diminished, and I cursed myself for listening. As a result, I had to go onto galactagogues such as fenugreek, oats, Motilium and the occasional Guinness sooner to build up my supply. When full time expressing, it is good for your body to produce more in the early days, because you can freeze it and stockpile for later when the supply will naturally drop. To keep milk supply up, not only must you feed every 2-3 hours or so, but the actual action of the baby sucking works to promote and stimulate supply. Of course you don’t get that when expressing. And it’s very hard to keep up expressing every 2 hours over a long period of time. You just…get over it. And your boobs hurt.
I would sometimes curse that I had to get up to express during the night. I co-slept so by rights I should have only had to turn over and let Sienna attach. I’d gotten up to my first baby who slept in a bassinet in my room for the first few months, and experienced massive sleep deprivation as a result. I’d looked forward to full time co sleeping from birth with my second child, and felt ripped off that even as a co-sleeper, to feed her necessitated getting out of bed. Likewise I cursed the fact that the days of grabbing the baby, a couple of nappies and a change of clothes and rushing out the door were gone. Going out sometimes required the planning and logistics of a military operation. Bottles? Check. EBM? Check. Cooler bag for EBM? Check. Breast pump? Check? Bottle warmer? Check. Extra bottles…and so on. I am most definitely NOT an organised, routine oriented type person! I found this aspect extremely challenging.
It wasn’t all bad however. In some ways it gave me more freedom-I could leave Sienna with her dad or my Mum and have some time to myself-to work, study or just relax. I found other ways to form a bond with my baby, such as baby-wearing and skin to skin contacts. The sadness never left completely but it faded-and was largely replaced with gratitude for her health. Sienna was exclusively breast milk fed for one week short of 7 months. At which point she began eating solids, and a week later, some formula was necessary. At 12 months of age in addition to food, she was drinking a ratio of around 80% breast milk and 20% formula. At 15 months it was around 60% breast milk, 40% cow’s milk. And at 20 month it was 30% breast milk and 70% cow’s milk. I expressed until she was 21 months of age, and was getting a pathetic 15-20 mls. I then decided it was time to stop. I had wanted to reach 2 years-but at that point there didn’t seem much point continuing for such a paltry amount. Not to mention I was OVER it. If I never saw another breast pump in my life, it’d be too soon!!
The benefits to Sienna’s heath were obvious when after having the surgery to fix her palate, the nurses all commented that her recovery was one of the fastest they’d ever seen. I just smiled and said ‘Breast milk ‘! And knowing she had that foundation for a healthy gut allows me to worry less that now as a fussy 4 year old her diet is often less than optimal! Being unable to breastfeed also gave me insight and increased compassion to those mothers who are unable to breast feed. Inability to breastfeed when you really want to is a kind of emotional torture. Giving formula when you know it’s not the optimal food, but you have no other choice hurts. It insidiously worms its way into your inbuilt mother-guilt gene, and taunts you with feelings of failure, self doubt, and inadequacy. I will never again judge (even unthinkingly) anyone who tried their best to breastfeed but wasn’t able to. I am not the first and won’t be the last to solely express for my baby. I was so proud and grateful though that I was able to do this for my child. As parents often we find we need to extend our parenting, in ways we hadn’t ever imagined we would. This was the first way I did this for my daughter.

This article in a slightly abridged form first appeared in Nurture magazine’s Winter edition 2009. It’s taken a long time to write (4 + years!) and was hard to be honest, due to the emotions I experienced being unable to breastfeed my daughter the ‘traditional’ way. I hope this is of interest to someone, and may even inspire someone else to do similar. Breast Milk is a baby’s birth right. While I have nothing but sympathy for women unable to breastfeed, and would never ‘blame’ anyone for feeling exclusive expressing is too difficult-I also want to reassure some for whom exclusive expressing may be an option that it is very worthwhile and while not easy at times, very rewarding and perhaps, less difficult than some might imagine.

Warning-this is LONG!!

Just as I was due to give birth to my second child, my first born was aged 3 years and 8 months-and was still breastfeeding morning and night. Liam and I had weathered the trials of the early days of breastfeeding together, and had come out victorious. The fact that I was still breastfeeding, with no plans to wean him at almost age 4 is due to my belief in the benefits of breast milk for toddlers and older children. It’s safe to say I was and am quite a lactavist. And it puzzled me why others didn’t always feel the same way. Sure breastfeeding was sometimes hard-but ultimately rewarding. I had little understanding about the reasons why some women couldn’t breast-feed-really there wasn’t all that much to it was there?

So while I was anxious about other issues surrounding the imminent birth and arrival of my daughter, breastfeeding her wasn’t something I anticipated having any problem with at all. In the early hours following her birth, she suckled a few times half heartedly, but soon gave up. A highly alert baby from the very second her head pushed out into the world, Sienna seemed more interested in observing those around her than in feeding. So the fact she didn’t seem to feed nor attach properly for several hours didn’t concern either the midwives or me. She was probably both tired from a difficult labour, and not all that interested.

Newborn

Eventually though, hunger go the better of her, and her interest in feeding was piqued by the juicy colostrum on offer. She still couldn’t seem to get a proper ‘grip’ and after a few minutes gave up. I still wasn’t concerned-after all it had taken weeks for Liam to learn to attach. However, a maternity ward nurse noticed something that had pretty much not even crossed my radar yet-the fact that milk was coming out of Sienna’s nose. She informed me she was just taking my baby off for a couple of minutes to examine her, and would bring her back very soon.

Of course, this immediately set alarm bells ringing. I tried to stay calm-but internally I was panicking-why would they take her away like that? I’d had one baby already, I knew that wasn’t usual. The negative voices in my head battled with the voices of reason, alternately screaming ‘something is very wrong!’ and ‘It’s nothing, she’s probably just checking for jaundice or something else normal like that’. When Sienna was returned 5 or so minutes later, by the nurse, the panic levels had risen a notch or 10. However the nurse was matter of fact. “Sorry to worry you, your daughter is fine-but I just needed to check something I suspected-and it turns out I was right. Your baby has a cleft palate-she has a hole in the roof of her mouth. It’s ok, it’s easily fixed these days by surgery. But she isn’t able to get the vacuum seal required to breast feed, so she’ll need to be bottle fed. We’ll go get the equipment and show you”.

sienna-in-sling

I was gobsmacked. In 5 short minutes the relatively uncomplicated existence I had foreseen bonding with my newborn baby, snuggling up in bed to breastfeed and getting to know each other had forever been altered by the utterance of those 6 words ‘she’ll have to be bottle-fed’. Just like that-so matter of fact, and yet so devastating. I thought stupidly, “But I’m a passionate breast feeder! I can’t bottle feed!” It seemed inconceivable. I knew at the back of my mind I ought to be grateful it was nothing too bad- this thing after all could be fixed. I knew nothing about clefts, and the fear and uncertainty about the whole medical side of that especially the idea of my baby facing surgery would come later. At that moment however, all I could think was that they were wrong-I refused to bottle feed, that’s not who I am!

After a few minutes discussion with the hospital staff however, I soon realised that if I wanted my baby to thrive it was in fact going to be necessary to bottle feed her. Babies with cleft palates usually cannot attach to breastfeed, because due to the air escaping out the top of their mouth where the cleft is, they are unable to form the airtight seal required to form the action. So really there was only one thing to say; “Ok then. I need a breast pump”. Because I had functioning, lactating breasts-and as long as I had functioning boobies, my baby would have breast milk. I gave strict instructions that absolutely NO formula was to pass her lips. I think my expression and general demeanour was such that no one in that room dared to argue! Instead, a lactation consultant armed with blue hospital issue Medela pump was despatched to my room immediately, and so began the process of learning to express full time for my newborn daughter.

Sitting in the nursery every couple of hours (when the portable pump wasn’t available) attached to a pump that looked like something out of a 1800s steam train engine, trying to stimulate the let down reflex in such a completely artificial environment and manner was a surreal experience. I am sure the nurses thought me odd insisting on having Sienna in her plastic cradle next to me at all times, rather than lined up with all the other nursery babies. Aside from wanting her close because I am an attached parent, having her to look at, and imagine she was really suckling at my breast (rather than the sterile, inanimate pump) was the best way to stimulate letdown. During these first few hours and days I felt sadness creep in at times, but I was determined not to let it take over. I just couldn’t afford to feel that too much; to allow this to defeat my resolve to feed my child exclusive breast milk, as I believed was her birthright. I was so lucky to have lovely supportive midwives and a lactation consultant (LC) to help me at this time. During the first day of expressing, they brought the pump to me for every feed, because I’d had a post partum haemorrhage requiring blood transfusion and couldn’t get out of bed. The LC spent hours with me, and gave me a calendar from her office with a picture of the Italian town Siena on it, because of my daughter’s name. Small kindnesses like this made it much easier to cope with the challenges of full time pumping. Friends, family and my independent midwife came and visited and brought me information printed from the internet about cleft palates and breastfeeding. They said it was OK to be sad I couldn’t breastfeed her. But I buried that feeling down deep, because I didn’t want to feel it. I was completely scared of falling in a heap and succumbing again to post natal depression as I had in the weeks after my son was born. I just had to make this work-it was as simple as that.

After coming home from the hospital my milk came in full force, and I was expressing at least 250 mls per breast each time. This was immensely satisfying. Despite the annoyance factor of having to get out the pump, wash and sterilise bottles instead of just putting my newborn on the breast I loved watching that gorgeous white-yellow milk flow into the bottles. I loved stocking the fridge up with bottles, and I loved bottle-feeding my baby staring into her eyes, in my arms or in the sling, just as if I were breastfeeding. I was fortunate to have a lovely Maternal and Child Health Nurse (MCHN) and LC from the local Maternal and Child Health Clinic come out, who were fully supportive, even pro attachment parenting and gave me loads of praise and encouragement to keep going with the expressing. The only dodgy bit of advice I ever received was from a hospital midwife on a home visit, who told me I was producing too much milk-she said my body ‘thought it was feeding twins’ and advised me to increase the amount of time in between expressings. Just as stupidly, I followed this advice. Of course my supply diminished, and I cursed myself for listening. As a result, I had to go onto galactagogues such as fenugreek, oats, Motilium and the occasional Guinness sooner to build up my supply. When full time expressing, it is good for your body to produce more in the early days, because you can freeze it and stockpile for later when the supply will naturally drop. To keep milk supply up, not only must you feed every 2-3 hours or so, but the actual action of the baby sucking works to promote and stimulate supply. Of course you don’t get that when expressing. And it’s very hard to keep up expressing every 2 hours over a long period of time. You just…get over it. And your boobs hurt.

Sienna-b&w

I would sometimes curse that I had to get up to express during the night. I co-slept so by rights I should have only had to turn over and let Sienna attach. I’d gotten up to my first baby who slept in a bassinet in my room for the first few months, and experienced massive sleep deprivation as a result. I’d looked forward to full time co sleeping from birth with my second child, and felt ripped off that even as a co-sleeper, to feed her necessitated getting out of bed. Likewise I cursed the fact that the days of grabbing the baby, a couple of nappies and a change of clothes and rushing out the door were gone. Going out sometimes required the planning and logistics of a military operation. Bottles? Check. EBM? Check. Cooler bag for EBM? Check. Breast pump? Check? Bottle warmer? Check. Extra bottles…and so on. I am most definitely NOT an organised, routine oriented type person! I found this aspect extremely challenging.

It wasn’t all bad however. In some ways it gave me more freedom-I could leave Sienna with her dad or my Mum and have some time to myself-to work, study or just relax. I found other ways to form a bond with my baby, such as baby-wearing and skin to skin contacts. The sadness never left completely but it faded-and was largely replaced with gratitude for her health. Sienna was exclusively breast milk fed for one week short of 7 months. At which point she began eating solids, and a week later, some formula was necessary. At 12 months of age in addition to food, she was drinking a ratio of around 80% breast milk and 20% formula. At 15 months it was around 60% breast milk, 40% cow’s milk. And at 20 month it was 30% breast milk and 70% cow’s milk. I expressed until she was 21 months of age, and was getting a pathetic 15-20 mls. I then decided it was time to stop. I had wanted to reach 2 years-but at that point there didn’t seem much point continuing for such a paltry amount. Not to mention I was OVER it. If I never saw another breast pump in my life, it’d be too soon!!

The benefits to Sienna’s heath were obvious when after having the surgery to fix her palate, the nurses all commented that her recovery was one of the fastest they’d ever seen. I just smiled and said ‘Breast milk ‘! And knowing she had that foundation for a healthy gut allows me to worry less that now as a fussy 4 year old her diet is often less than optimal! Being unable to breastfeed also gave me insight and increased compassion to those mothers who are unable to breast feed. Inability to breastfeed when you really want to is a kind of emotional torture. Giving formula when you know it’s not the optimal food, but you have no other choice hurts. It insidiously worms its way into your inbuilt mother-guilt gene, and taunts you with feelings of failure, self doubt, and inadequacy. I will never again judge (even unthinkingly) anyone who tried their best to breastfeed but wasn’t able to. I am not the first and won’t be the last to solely express for my baby. I was so proud and grateful though that I was able to do this for my child. As parents often we find we need to extend our parenting, in ways we hadn’t ever imagined we would. This was the first way I did this for my daughter.

sienna













Jayne is the author of Spiralmumma and the woman behind the Australian-based online attachment parenting community, Alternative Baby. You can read Jayne’s story about breastfeeding her first child, Liam, right here on ibreastfed.com.

Filed under: Cleft lip/palate, Exclusive expressing, Expressing, Latch problems

Comments

5 Responses to “Breast-milk feeding a cleft palate baby – Jayne and Sienna’s story”

  1. Cleft lip and or palate - Page 2 - Parenting Forums - Natural Parenting Forum on September 26th, 2009 9:52 pm

    [...] palate Lisa, Whilst doing the nappy hunt I came across this and thought of you. It may help Breastfeeding a cleft palate Baby __________________ Karena – newly single Mumma to Harry 5 years old Brock 15 mths [...]

  2. Charndra from Part Time EC on September 27th, 2009 8:03 pm

    Hi Jayne,
    Wow, I really found your story inspiring, and I appreciate gaining such an intimate understanding of your emotional journey from the moment of Sienna’s birth.

    As a co-sleeper from birth myself, I can relate to your feelings of being ripped off that going to bed with your baby and snuggling up was not the easy thing it had been with the first.

    My baby Jett has TEV (he was born with a clubfoot), and so going to bed means putting on boots and a brace holding his feet pointing out and shoulder-width apart. And he wears a nappy – which was the thing I found hardest to adjust to actually!

    I think you are amazing for simply sticking to your guns, doing what needed to be done to give Sienna your Liquid Gold! As a prem baby myself, I was bottlefed expressed breastmilk for 9 months. I like to consider I was breastfed via a bottle, and though I have sadness that I didn’t experience what my boys do (and I think that is why I am so determined to breastfeed them), I have a huge, HUGE feeling of gratitude and thankfulness that my Mum expressed for me for so long, knowing how much it helped me.

    I’m sure Sienna will grow to feel the same way. I’m glad you feel sucha sense of reward and achievement for your efforts.

    Charndra

  3. Jayne on September 28th, 2009 8:56 pm

    Hi Charndra, thanks so much for posting about your own experience as a baby! Wow, it must be a little difficult at times having to put your baby to bed in a brace like that :( Are you still able to co-sleep? I’ve seen your EC site in the past-It can be hard to compromise hey? But you sound like a very dedicated, inspiring mama!

    Thanks too Karena for sharing the link, I hope this helps someone :)

  4. Charndra from Part Time EC on September 28th, 2009 10:30 pm

    Hi Jayne,
    Oh yes, we co-sleep. Jett sleeps on a sheepskin next to me (his ‘fluff’ we call it) It feels really important to have this so natural sleeping arrangement when so much of his early months were hospital visits (12 plaster casts then 3 months full-time brace wear) and then always this darn brace at night when I so love to have the baby snuggles… we di get to occasionally, and that is wonderful…

    I guess these compromises make us more understanding and empathetic of others, for sure. I too am so glad that other than his foot (which is corrected, just waiting out his childhood growth spurts until 5), Jett is perfectly healthy, and such a gem, I gush over him! LOL…

  5. Jayne on October 10th, 2009 1:03 am

    Lovely :) Co sleeping really is magical! LOVE the name Jett too :)

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