Frenectomy procedure has destroyed my son's ability to suck

(14 Posts)
nptfab Mon 23-Sep-13 20:57:57

My son was born on 3 september and from the minute he was born, refused to latch on. In fact - he showed little or no interest in my breast for the first two days of his life.

The LCs at the hospital were not at all concerned, saying that it is perfectly normal for a newborn to not latch or show interest in the breast, and that as long as I was giving him 15 drops of hand expressed colostrum every two hours in the first few days that everything was OK.

In fact - all the doctors we saw at the hospital (3 altogether) were also not concerned, reconfirming what the LCs said and reassuring me not to worry.

By the time he had gotten home he had just about started to latch on, it was painful, but no more painful than I imagined it would be, but even though he was on and sucking, it was clear that he wasn't really getting anything from my breast - particularly since my milk had not come in.

We were adamant to continue breastfeeding, and so I was pumping out as much colostrum as I could possibly pump (hand pump) and my husband and I were feeding it to him in a syringe every two hours. Obviously he was not getting enough. His first doctors appointment didn't go well and he had dropped 12% of his birth weight and we were advised to switch to formula.

Adamant that we didn't want to introduce the bottle, we fed the formula to him with the syringe, and then later a supplemental nursing system, as advised by our lactation consultant. This way I was getting the nipple stimulation I needed to get my supply going (bearing in mind my milk still hadn't come in).

A midwife we met suggested we look at his tongue to see if it is tongue tied - and it turns out he had a severe upper lip tie, and a tongue tie, which was making nursing impossible.

We took him to the doctor, and he got the tongue snipped by a local ENT, who told us that he should be better later that day. When we got home he was in so much pain, he refused to latch on to my breast and so we were unable to feed him by the SNS, and so back to the syringe for us.

Two days later, he is STILL not nursing and struggling to eat (at this stage it was taking my husband and I 3 hours to feed him 2.5oz of formula using the SNS). The lactation consultant came by and said that his tongue tie was still there and the original doctor did not snip it far back enough.

She recommended a well known and highly reviewed surgeon which we scheduled an urgent appointment with. The procedure was done by laser. The doctor said that the previous ENT had not done a great job on the first procedure and that he would be in quite a lot of pain for a few days and his recovery would be longer.

Here we are - almost two weeks later, and he is even worse than before. He can barely suck on our finger, and we have had to resort to feeding him with a bottle.

Now he will not at all take my breast, and he sucks at the bottle so limply that feeding him 4ounces sometimes takes an hour! He went from latching on but not being able to get anything (but still with a decent suck) to not even being able to suck a bottle or a finger properly.

We have tried to give him a pacifier (again, not in our plan) but he cannot even keep it in his mouth.

The lactation consultants and doctors who have seen him have said that his slow recovery from the tongue tie procedure is very unusual, and they have recommended that we take him for occupational therapy "suck training" where he needs to be taught how to use his tongue again.

For me this is very worrying - isn't sucking an instinctive thing in babies?

All this time I am pumping like a fiend (my milk only came in on day seven) and producing just enough to feed him almost exclusively breast milk. So there is one positive at least.

Here are my questions:

Has anyone heard of or had their child see an Occupational therapist for "suck training"? Is it possible that we have forever damaged his ability to suck and therefore to eat? Is there a chance that his tongue could be permanently damaged as a result of the frenectomy?

Is my breastfeeding dream crushed? Assuming his tongue gets fixed, will I ever get him on my breast again? I have tried very hard to offer the breast before every feeding, to no avail. He tongues it sometimes, puts it in his mouth but never takes anything further than my nipple in, and he never latches. I do skin to skin as long as I do not have the pumps attached to me.

Does anyone have any good advice to offer on how we can go forward from here? We are seeing multiple lactation consultants but no one seems to be offering anything new or helpful anymore.

Thank you so much for reading this massive diatribe. I tried very hard to make it as detailed as possible without including too much superfluous information. I hope someone can help, as I am feeling rather quite desperate. First time mom insecurities, coupled with the fact that I feel like such a failure as a mother, has not made for a good first three weeks of my gorgeous son's life.

CityDweller Mon 23-Sep-13 22:00:46

Oh gosh - you poor thing. This sounds like an awful ordeal for all of you. You musn't feel like a failure. You're going above and beyond to try to make breastfeeding work for you and that's very impressive. That itself speaks to what a great mother you are already.

I don't have a huge amount of knowledge to speak from, only my experience with tt DD (3 snips, kept on growing back, so we just worked with what we had). I should have thought, however, that if you sort out DS's sucking then you should be able to establish breastfeeding. I'm sure some bf experts will be on shortly to help out on that front.

Re. the tongue tie and sucking - if you're interested in seeking further opinion I can highly recommend the person who snipped DD. She's in London (west) and was trained by Mervyn Griffiths at Southampton (one of the TT experts). PM me if you'd like her info. Did you have his lip tie lasered as well? If not, could it be this that's impeding his sucking too? I believe there's one person in London who'll laser ULTs (Dr. Levinkind, I think his name is - he's a dentist).

Also, have you thought of cranial osteopathy? It can help sort out structural issues caused by the tt that may prevent DS from feeding properly.

JiltedJohnsJulie Mon 23-Sep-13 22:03:12

Really, truely sorry that I haven't got anything new to add, just didn't want you to go unanswered.

You are not a failure either. In no way can you ever look back on this and think that you gave up too easily. You are doing everything you possibly can and probably a lot more than most mothers would, including me.

Hope someone comes along soon with some proper advice smile

mawbroon Mon 23-Sep-13 22:23:28

It might be a good idea to join the Tongue Tie Babies Support Group on Facebook. There are loads of knowledgeable people on there, both mothers and professionals who specialise in ties.

I'm sorry to hear that the first procedure was done badly. Sadly, not all frenectomy providers are equal sad

Same question as CityDweller - did you get the upper lip tie revised too?

minipie Mon 23-Sep-13 22:35:30

So sorry to hear you are going through this. please please don't blame yourself.

The only other thing I can think of to help is to take a look at the Medela Special Needs feeder - it is an unusual bottle which is specially designed for babies with a weak suck, so might make bottle feeds easier, and it's also designed to mimic breastfeeding ie the baby has to suck in the same way as on the breast in order to release milk - so gives you the best chance of establishing BFing. but the main thing at the moment is that he gets fed.

Are you pumping with a hospital grade pump? if not, you could ask about renting one. they are much quicker and more effective.

I can't answer your questions about whether there has been any damage but it's a good thing he is being referred for therapy as tiny babies are very good at healing and adapting if they get help quickly. What do the surgeons say about damage? Can you ask them exactly why they think this has happened?

Wishing you the very best of luck.

drawohamme Mon 23-Sep-13 22:41:53

Don't have much to add other than what other posters have said but just wanted to give support. We had all sorts of tongue tie breast feeding problems when PFB was born eleven weeks ago an it tore me to bits. No matter how things turn out just keep in mind that this is such a short period in your lives together and the most important thing is that the two of you are happy.

Best of luck!

Twattybollocks Tue 24-Sep-13 07:40:52

I would also look at the medela special needs feeder. The teat has a special design that allows you to control the flow depending on the ability to suck, and you can gradually reduce the flow as the suck gets stronger over time. Also, you say the tongue tie has been sorted, but has anyone looked at the upper lip tie? Every hcp who I spoke to says they don't affect feeding, but let me tell you, the word on the ground from women who have babies with a lip tie is that what the hcps are telling you is a crock of shit. Ult does most definitely affect feeding, it affects how deep the latch is, and also affects how well they can create a seal on the breast or bottle to suck. there are a couple of people in the uk who will deal with a lip tie as far as I'm aware, one in Huddersfield and one in London, but there may be others.
realistically you are looking at a long road to get him on the breast 100%, but you are expressing well and he is getting 99% of the health benefits of bf by having bm in a bottle, so if you decide to continue with that then go girl.

nptfab Tue 24-Sep-13 15:50:08

Hello everyone. Thank you so much for your support and for your considered responses.

I'm actually a Brit living in the US, so can't take any of the recommendations for the doctors, but we've taken him to the country's expert on this matter, and both procedures were done by laser. We had the upper lip tie (severe) sorted as well.

We've also taken him for cranio-sacral therapy and will continue to do so.
I will also repost this on the tongue tie board and see if anyone can add anything further.

Lastly - I really am blow away by the warmth and compassion shown in your responses, thank you so much for making me feel like this is not the end of the world as I originally thought and for making me feel less of a failure somehow. I really appreciate it.

Ragusa Tue 24-Sep-13 22:57:50

It really isn't the end of the world. Hard as it is to believe now, in a few years time you Will have forgitten many of the details of this early period smile

The medela/haberman feeder sounds like a good idea. I agree that for now all the focus needs to be getting milk into yr baby, one way or another.

You have a good supply (by the sounds of it) so you can try reintroducing the breast later. It's never too late to try again... DD was 9 weeks before she had her 1st BF smile

Monikita Thu 26-Sep-13 11:20:31

DD had three TT procedures as well and it's still there. She was 22 weeks by the time the final lasering was done (she had her upper lip tie done by Dr Malcolm Levinkind) and so had gained really bad habits in the way she sucked. I had to re-train her to suck properly.

Here are the suckling exercises I used: feedthebabyllc.com/suckling-exercises/ and babyandbump.momtastic.com/breastfeeding/1380239-advice-baby-unable-open-mouth-wide-enough-latch-correctly-2.html (you need to scroll down to the last post).
Ideally you do it before every feed but before your little boy is actually hungry (You're probably thinking, when the hell do I get a chance to do that?). The idea is that after a few days, he'll begin to associate the exercises with feeding and then will start to alter his suck pattern.

DD had breast aversion as well and I found doing lots of skin to skin helped, though not necessarily in bed all day - I ended up focusing too much on the feeding. My mum suggested just sitting in front of the telly with my boobs out and letting DD root in her sleep, then latch her on. The food network was my saviour!

I know how hard it is when you feel like you can't feed but your lo is still so young that you have an advantage in helping him to learn to suck properly. You're doing an amazing job smile.

adagio Thu 26-Sep-13 11:33:24

You are doing so well and clearly trying so hard, well done for getting so far. I am so sorry it has not gone so easily fir you and your poor baby is so uncomfortable.

My baby did not have TT so no direct experience, but I did experience birth weight drop off and the 'threat' of formula in the first couple of weeks. I was expressing/topping up with the EBF from a bottle and I believe the bottle did help her to 'learn' to suck properly (long deep pulls) as initially, she didn't seem to suck that well. In other words, I can imagine therapy could work or at least help. I used Medela Calma teat, but as I say, no TT.

Now 9 months and still EBF (when not throwing food around the kitchen). Oh and she hates bottles grin we stopped topping up once she got the hang of it and started gaining.

Lavax123 Wed 16-Apr-14 19:09:15

I am new to this forum so pardon me for activating a dead thread. My dd just has her frenectomy done at 7 weeks. Her sucking has become worse after the procedure. Need some advice on what I can do next. Any help would be much appreciated.
Nptfab , how did your baby get back his sucking reflex ?

Sillylass79 Wed 16-Apr-14 19:46:34

Message withdrawn at poster's request.

HaelynsMum Mon 21-Apr-14 01:20:22

Hi nptfab, lavax123 and sillylass79. I'm not sure if I can help any of you but I really feel for future mums there needs to be more discussion of babies who's breastfeeding worsens after TT related procedures. The only procedure that is proven to be safe is frenotomy. As I understand the procedures of frenectomy and lip tie 'revision' have not been reliably proven to be safe. Would you guys be kind enough to confirm exactly which procedures you had and in which country? Are things any better for you? I hope you are both able to keep up your milk supply if your babies continue to have difficulty, by combining breastfeeding and expressing if necessary.

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