A newbie hello! Anyone gone from an unsafe swallow to feeding orally among other questions!? — Scope | Disability forum
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A newbie hello! Anyone gone from an unsafe swallow to feeding orally among other questions!?

mamafee Member Posts: 3

Our little girl is 4.5mo, born oxygen deprived at 38w (emergency c after heart depreciations in labour at home), diagosed grade iii (severe) HIE and last week we got a CP diagnosis, which we knew already.

She was in NICU/SCBU for her first 5 weeks of life, she had cooling for her first 3 days.

She had no/little suck, no gag reflex and we were told an unsafe swallow, she's fed 100% EBM via an ng-tube. 4 months down the line Speech and Language say she still as an unsafe swallow and is not recommending a videofluoroscope but her paediatrician says we should get one so we'll be pushing for that. The great news in the last few weeks is that she has developed a gag reflex! I had her beginning to suck but after a chest infection when we were suctioning in her mouth more than usual, she tends to clamp down again but we're working back up.

I put her to the breast several times a day while being fed via ng-tube, she doesn't latch and only recently has she showed any interest but it relaxes her to be put to the breast, I express a tiny amount of milk onto my nipple and rub that on her lips.

I'm a member of La Leche League UK (http://www.laleche.org.uk/) and trained as a breastfeeding peer supporter with my son who's now 2yo, breastfeeding is something I'm extremely passionate about. I'm wondering if there are any Mothers out there who've successfully breastfed a baby/child who was initially diagnosed with an unsafe swallow?

If not breastfed, successfully fed liquid of any kind? I feel like our beautiful little girl is advancing so very much, my husband heard er audibly swallow after a big cough this morning, we feel like she's learning.

Any advice, info or stories are much appreciated. We feel so lucky to have our little girl, things were very close to being SO very different. She is severely deaf, but now has hearing aids and is going for visually evoked sight tests in January, we think she sees light and dark but she doesn't track consistently, but we feel she's seeing something lately and she does sometimes seem to track you, albeit a bit slowly.

It's a tough time emotionally, that's for sure, but with a 2yo boy as well as our little girl to look after, times are also very busy, probably just as well because there's less time to sit and ponder :)

Thanks x


  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Hi hon

    You sound like you are doing such a wonderful job! I just wanted to tell you how brilliant you are and give you a boost to keep going!

    My son Tom is a twin and has quad CP. They were born at 32 weeks and were NG fed breastmilk from birth. I did the same as you, having him on the breast while he was fed EBM by tube and expressing a little to try and coax him to try to latch but it didn't come to anything and then, suddenly, just before they came home, we suddenly managed to get the suck reflex established and they both fed from me. We didn't know he had CP until he was 11 months and, like you, I was dedicated to breastfeeding both of them but found that he just couldn't latch on, coughed and spluttered, and worst of all, swallowed LOADS of air while he was feeding and then howled and howled for hours after. I contacted the NCT breastfeeding councillors and also had a lactation consultant come to our house but having fed my eldest, Molly, for a year, I knew that I wasn't doing it wrong. We just knew that something wasn't right (the professionals diagnosed colic but we knew it was more than that) and it soon became more apparent when his twin sister's physical development rapidly overtook his. That's when we finally got a diagnosis, after the 10 month check.

    Tom managed to sustain himself sufficiently on breastmilk - he's never been a big boy but always pootled along between the 9th - 25th centile.

    We finally and reluctantly went over to bottles at 6 months because I at least could have help feeding the twins and manage dealing with feeding Iris while Tom was being soothed through his tummy pains. His milk was thickened with a starch powder called 'Thick and Easy' - to slow down the flow and take the panic out of feeding for him. We needed to slash open the holes in the teats because his milk was so thick but it certainly seemed to really help him manage greater quantities of milk. Molly was 2 and a half when tom and Iris were born and she really went without a lot of attention all the time I was breastfeeding so it was good to get back to being there for her a bit more.

    Having said all of that, he's only ever had an 'unco-ordinated' swallow, never had an 'unsafe' one - he's never aspirated food, never had a lung infection and always been able to clear food and drink with a good gag. He's been eating solid food since 6 months old and has struggled but persevered with it. He's certainly doesn't find eating easy although he loves his food and is always hungry! He still splutters with his drinks but has mastered using a straw and sipping from an open cup. We've found Conductive Education brilliant in terms of helping him with eating and drinking and also bring his physical skills on.

    I wish you loads and loads of luck with your little poppet and hope that she manages to further develop her swallow and eventually feed from her mummy directly. As you say - no time to sit and dwell on our worries when we have our little ones to love and cherish and all the never-ending mummy chores to do. We are both blessed with little ones who could quite easily have not been - we have so much to be joyful about.

    Loads of love and Happy New Year to you all.

    Maria xxx
  • forgoodnesssake
    forgoodnesssake Member Posts: 415 Pioneering
    Hi, if i could access one of my posts from years ago it is all about breastfeeding a baby with CP, and how little support there was, or at least informed support!

    In a nutshell my son is now 14 and has athetoid CP and among other things, no speech due to being very affected in his face/mouth. So whilst he had suck and swallow reflexes at birth (HIE and 9 days in SCBU after a planned home birth, no negligence, just one of those things) he was NG tube fed expressed colostrum for 2 or 3 days then bottle fed colostrum/EBM for 6 weeks as he just did not have the right gape and latch mechanisms. By 6 weeks and with a toddler in tow, I knew i couldn;t go on expressing and bottle feeding and so tried using nipple shields to help latch (I had needed these briefly for my older son, who I b/fed for 2.5 years) My son was able to latch onto these and so we used them for 3 weeks but in that time no significant weight gain (not betting enough hind milk) so had one last attempt at "proper" b/feeding and amazingly he managed to latch on (9 weeks) and for the next 3 years bm was his main liquid as he really struggled with liquid out of a wee flexi cup and I did not want to go back to a bottle. At 15 months old Bobath Centre recommended thick and easy which was relatively successful at giving him some other liquid and we probably stopped using that at age 3 or 4 (cant; remember now!). By age 3 I was only b/feeding at night and morning and so i stopped just around his 3rd birthday.

    He has always eaten and drunk orally but does still really struggle to get enough calories in and does have to have food very finley chopped or pureed as he has a very slow and unco-ordinated swallow (investigated by videofluoroscopy about 5 years ago) and can't chew properly or move food around his mouth with his tongue.

    Last March I gave a short talk on this at the UK's first breastfeeding conference (which just happened to be held in my home town!) as it is an issue which even now does not get enough attention. I have spoken to Scope about this in the past, though my main focus now is on communication for children without speech.

    When my son was born 14 years ago i was just starting training as an NCT breastfeeding counsellor, but was unable to continue for obvious reasons, but at the time they had very little info on feeding babies with problems, excpet cleft palate and Downs. Similarly with La Leche league who I also contacted to no avail. LLL had/have a skills register so I pout myself on it in case any other mother of a baby with neurological damage wnated to talk about feeding issues but I have only ever had one call and that was just after I went on it, so maybe they don't do that any more..

    So, whilst my son was never deemed to have unsafe swallow, we have always had to be very careful with his food and liquid intake and actually we have a written protocol from his SALT and Paed. for use at school etc. This is mainly becuase he has a tendency to get food stuck in his pyriform sinus (which is a sort of pocket in the throat) whcih then has to be ejected somehow. It is not asphyxia but it is not nice for him or those feeding him!

    All the best, jenny
  • mamafee
    mamafee Member Posts: 3
    Thanks, ladies, so nice to know we're not alone!

    I'm going to push for a videofluroscope because I'm not convinced of the unsafe swallow, I'd like it properly looked at. Salt are worried that she'll choke but as I point out, she chokes pretty much every time she wakes up and sorts it herself. I've also seen and heard her swallow now too :)

    I'll find out about the LLL specialist area, thanks for that! I guess because we've only just had a diagnosis of 'evolving cp' that my contacts at LLL might have missed your details because they were searching and asking about the suck/swallow. Who knows!

    Oh the fun we've yet to have! X


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