BY EMILY THOMAS
Hi, I am Emily. Mummy to three; Amari 5, Avery 3 and Aria 15 months.
I’ve breastfed all 3 of them, it was something I always knew I wanted to do. With my first it came naturally but he was diagnosed with CMPA (cows milk protein allergy) at 6 weeks so I became dairy free. My second wanted to feed literally all the time and had really bad reflux but we made it to 16 months of feeding. When I had Aria I thought surely I’m due an easier time, I was wrong, it’s been my toughest feeding journey. I hadn’t even contemplated baby tongue tie, but here was our experience..
BABY TONGUE TIE
I had aria in September 2019, after my longest most traumatic labour. As soon as she was born I had skin to skin, she wasn’t bothered about latching on so daddy had some skin to skin and I tried again, she still wouldn’t latch on properly. After trying for a while I started getting upset so my husband said get showered and calm down and try again. I tried again, she was crying, I was crying so I buzzed the midwife and told her. She told me to just get her to sleep so I did. They then came and said I could go home but I wasn’t happy as she wasn’t feeding.
On the ward Aria still wouldn’t feed so I was told to strip her every 2 hours and express into her mouth. Eventually around 7pm she latched on for a few minutes so they said I could go home and they’d send a breastfeeding midwife first thing tomorrow morning.
Fast forward to day 7 after a week of going to the hospital everyday for jaundice checks and Aria had lost 13.8% of her birth weight, she lost 10% on day 3 and 12.8% on day 5. We were referred to the children’s ward where they took bloods and said they wouldn’t let her leave until they knew she could gain weight. I went home to get our things and when I came back they said her bloods were fine and as long as I followed a feeding plan we could go home. I had to feed her every 3 hours and top up with expressed milk.
I followed the feeding plan and Aria began getting weighed 3 times a week and blood tests once a week. I asked about her latch and if she could be tongue tied and they said it all looked fine. Her weight gain was soooo slow. Around 5 weeks she was 60g below birth weight so I asked the consultant if we could stop top ups and was told I could. 3 days later she’d lost 100g so we went back to tops. Again weight gain was slow. During one of our weekly hospital appointments a consultant said ‘you don’t want to see the breastfeeding support worker while you wait for her bloods do you? You know what you’re doing don’t you?’ I said I would and within seconds of seeing Aria feed she said she thought she was tongue tied.
We got an appointment within a week and Aria did have a tongue tie so they cut it. 5 days later she was finally back to her birth weight at 8 weeks old . I was so relieved. I continued with top ups for a while and slowly started dropping them. Aria was now getting weighed twice a week. Her weight gain was still slow and I was told it was down to my poor quality breastmilk!!! Aria continued having blood tests as her weight gain was slow, they tested liver, kidney function, full blood count and numerous other things.
At 10 weeks she had lost weight again so they said they would test for metabolic disorders. I had no idea what they were and they told me some were life limiting. I was heartbroken. We had to wait for the results over Christmas and I honestly thought she wouldn’t make it to see another Christmas.
At 5 months aria was still below 0.1% centile but the health visitor was happy she was gaining. I was tired of feeding and expressing every 3 hours so I contacted a private lactation consultant and after sending her a video of aria feeding and speaking to her she said Aria was still tongue tied. I took aria to the clinic at 5.5 months and they cut it, twice. They said it was never cut properly the first time. They told me Aria was starving and had no energy which is why she didn’t wake in the night unless I woke her. My poor baby girl. Within a few weeks her weight gain improved so much. I carried on expressing until she was 10 months. She’s 15 months now and I’m still feeding her.
The lactation consultant advised us to take Aria to see an osteopath as she had been tongue tied for so long, then lockdown happened. During lockdown Aria gained weight well but never made any sounds other than when she cried. I took Aria to see an osteopath at 10 months and they said she’d got a lot of jaw tightness and couldn’t move her tongue properly still, she also had some reflex issues, all of this was caused by the fact she was tongue tied for so long. After several sessions Aria finally started to babble and made lots of improvements.
I feel we were let down by our trust. They didn’t once contact me throughout lockdown and she was still underweight and getting weighed every week. I’m waiting to hear back from them, I’ve asked why it took so long to diagnose and why they don’t routinely check.
If your baby loses lots of weight or things just don’t seem right please ask and ask again to check for tongue tie. My baby was starving but I’m lucky she’s her with me today, the next baby might not be so lucky.