Our Tongue Tie Hell

Image sourced from flikr  - madamepsychosis

Day 0. 

Baby D3 was born at home, his birth was amazing and he was put to the breast within 5-10 minutes of being born.  He nursed beautifully. 

Day 1.

36 hours later my nipples were blistered and my milk was beginning to come in.  I was pretty sore and things were not going quite so beautifully.  We went to Peterborough Hospital for his routine paediatric check and whilst we were there I put in an SOS to the breastfeeding support people (Infant Feeding Advisers).  

I will just say at this point that I struggled to feed both my other children so wasn't totally surprised to be sat in a side room waiting for the infant feeding advisers (IFA).  After struggling to feed D1 I became a peer supporter determined to help others in a similar situation and to understand where we went wrong.  After attending a six week course and reading everything I could, feeding D2 was going to be a totally different experience. Right? Wrong.  It was agony.  Worse than the 1st time round with D1 and it never really got any better and no one was able to help. 

The IFA that turned up to see us recognised me from my struggles with D2.  She observed a feed, checked for tongue tie and concluded that I was "lacking confidence" after such a bad experience with D2.  D3 was making clicking noises when feeding and my nipple was coming out very slightly lipstick shaped but we were told our technique was was pretty damn perfect and that our biggest problem was me looking too closely at our latch but to "please go back" if we had anymore problems.

Day 3.

My milk was well and truly in, to the point of engorgement but we kept plodding on.

Day 4.

Things just weren't improving and mastitis began to kick in.  I was feverish, shaking with cold and my breasts were agony.  I managed to nip it in the bud with ibuprofen, massage, warm compresses and cabbage leaves.

Day 10.

More shivers, shakes and sore breasts. Again I managed to stave off the mastitis. 

Day 15. 

The mastitis had reared it's head again but this time I just didn't have the energy to fight it so i took myself to the doctors for a course of antibiotics.

Day 17.

We went back to see the IFA at he hospital. I told them how much we were struggling and got quite emotional, I told them about my recurrent mastitis (different breasts each time), I told them that baby D3 did nothing but cry and projectile vomit after each feed.  

It was thought I had raynaud's of the nipple which was adding to my discomfort when feeding and they also suspected D3 was suffering from reflux and suggested I took him to a doctor for baby gaviscon.

I asked a lot of questions on Facebook and spent a LOT of time on google.  Somehow I just knew D3 wasn't suffering with reflux and after some research we introduced a dummy to help him work through some of the wind in his system rather than medicate unnecessarily. This did help a little bit however he struggled to keep it in his mouth.  

Day 28.

The feeding got worse and worse, he would fuss at the breast, couldn't maintain a latch, would appear to be in constant pain with wind and the dummy was becoming less effective. Nappies were not consistent in colour and consistency and my nipples were getting sore again. I developed a breast abscess the size of a satsuma. I had it drained/aspirated 4 times and was put on antibiotics again. I think I took antibiotics for 4 weeks straight. I am still undergoing treatment for this as I type.

At some point someone asked if he had been checked for tongue tie. He was checked on day 1 by the IFA and again at 2 weeks so I dismissed them. Something kept niggling at me though and I started to hear about something called posterior tongue tie. I started to research and came across this website. The more I read the more I began to suspect that this may be our problem. 

Week 6.

I marched back to the breastfeeding clinic at the hospital, armed with my iPad and the information I had found, hoping to get a diagnosis and a referral for treatment.  The IFA I was hoping to see was not in clinic but the the lady covering watched me feed, read my research and agreed with me. I was very emotional and she told me she would pass on all my details and even phone the IFA that could help me as soon as clinic was over. I went home and waited for her to call.  She didn't call.  

After a post on the Analytical Armadillo's  facebook page someone suggested I contacted the lady at La Leche League Peterborough  to see if she could recognise a tongue tie or help with the problems we were having.  I made contact with the lovely lady at LLL, she said she wouldn't be able to diagnose a tongue tie but went out of her way to find me all kinds of information and links.  One of the links she sent me was this one  http://thelogicallady.blogspot.com/p/posterior-tongue-tie-information.html  and once I had read it I was absolutely certain I had hit the nail on the head with my tongue tie theory.  She also said she would email the IFA at the hospital.  The IFA still didn't get in touch.  

Week 7.

The health visitor came out to see us for our routine checks, she asked how the feeding was going and I became emotional again describing how painful it was for us both.  I told her of my tongue tie suspicions and I tried to show her the articles I had found.  She would not look at them.  She had a brief look in his mouth and commented that D3 had a "short tongue" but no tongue tie.  She began to talk about bottle feeding and medication as solutions to our problems.  I became very emotional at this point and kept repeating that these were just not options - I wanted the tongue tie to be fully explored; this all fell on deaf ears as she started to talk about post natal depression.  Perhaps I should consider some "help" for my emotions.  She also said she would talk to the IFA at the hospital. Guess what? The IFA never phoned.

I called the LLL lady for a rant and she was able to supply me with a couple of lists of Professionals that should be able to diagnose and/or treat tongue tie.  I bit the bullet and phoned Suzanne.  As soon as she answered I began to cry... Again.  Suzanne was brilliant and took control of the conversation asking me if I was having problems feeding my baby.  She arranged to see us that very evening.

Tongue tie was diagnosed and a frenulotomy performed.  D3s feeding/latch improved instantly and was feeding better than he had before within 60 seconds of the procedure being performed.

Week 9.

Two weeks later and we still have the odd problem latching but the improvement is amazing.  I still think there is room for yet more improvement and I am wondering if, perhaps, the wound may have knitted back together a little or if some cranial osteopathy would do the trick?  D3 has also had chicken pox and a chest infection which has hampered his feeding so this will have prevented him 'practicing' using his new tongue properly and maybe the extra improvement I am seeking may just happen given time...  I will keep you posted.

In summary I feel totally let down by the NHS especially as we have one of the few hospitals that have been awarded "baby friendly" status.  I have a brilliant milk supply and strong let down reflex and D3 has gained weight beautifully but ONLY because I have effectively been pouring the milk into his mouth - no nursing required, thus masking one of the biggest signs of tongue tie.  I know that if D3 had not been gaining weight properly then my concerns would have been listened to and investigated.  My feeding discomfort and the obvious pain D3 was in was not good enough.  D3 was gaining weight, therefore I was doing a "great job" and to para phrase I should "put up with it".  I also think that health care professionals should understand the emotional investment a mother makes when feeding her child and she should be taken seriously when she says something isn't right.  The IFA that was able to make the referral for us to be diagnosed and treated on the NHS was approached by three other people to discuss my case and I can only surmise that she "chose" not to contact me.  I realise that my previous statement sounds a little bitter but that is because I am.

If you have stumbled upon this blog through a google search because you suspect your own child may have tongue tie, I want to urge you to trust your instincts and not dither as much as I did, also to be stronger than I was in fighting for diagnosis and treatment.

UPDATE!
we went back to see Suzanne and had the tongue re-snipped as it had knitted together slightly.  D3 is now the most happy content little boy and I am totally pain free.  He is the most gentle feeder and I am grateful on a daily basis.  I also have had to deal with stress and anxiety problems and I firmly believe that these could have been avoided had I had support from the beginning.