This is like one of those weight loss adverts, but backwards. It has taken me a long time to write about Alex’s dramatic weight loss and subsequent rebound because it has taken me the best part of a year to process everything. This was Alex at 5 months old, dramatically skinny and pale but extremely happy and playful.
We got off to a great start breastfeeding. I was nervous about it because Nate had a tongue tie and we struggled for the first four months to establish breastfeeding. I had a few bad habits to shed from feeding Nate (there was a particular latch on technique to train his tongue to stretch out) but we sorted it all out within a few days and had a few easy, wonderful, typical months of breastfeeding a tiny baby. He fed every couple of hours, was generally in good spirits and settled well after a feed. I felt funny flickers of his tongue after about 5-10 minutes of feeding, but I thought nothing of it. He’d come off pretty quickly but seemed satisfied, or so I thought. He wasn’t really a good conversationalist at this point. There was nothing to indicate anything was wrong until around 3 months when his weight started to fall dramatically.
We noticed something was wrong when he failed to have a dirty nappy in over 10 days. (Nate had gone 11 days when he was a baby and our GP advised us that some kids just aren’t regular, but I still wanted to check it out) At the GP, we realised that Alex had fallen far off the centile chart. Now, some kids are going to be low or hight on the chart, someone has to be in the outer margins. But for an otherwise healthy kid to not just stop gain wait, but lose weight, something is very wrong.
We were referred to a private paediatric consultant (we tried going public, but would have had to wait until he was 10 months old to get an appointment. You can see from his pictures that that was not an option). Our consultant advised us to introduce solids at 4 months while continuing breastfeeding and monitored his weight gain for a few weeks. He continued to lose weight, so end of September we were admitted to hospital for a week (these pictures are from our stay). During this time Alex had to undergo a battery of tests and I fed him under supervision of a dietician. Everyone was very supportive of breastfeeding because I told them it was important to me. I also didn’t want switching to formula to mask any underlying health problem he might have.
In hospital, we learned that everything was in perfect order. His heart, metabolism, lungs and stomach were fine. He was tested for CF and other pretty scary disorders. I was asked to pump so that we could measure his exact input versus his weight gain. This was really difficult for me, as well as Alex. I had begun comfort feeding him, but couldn’t do that while trying to pump certain amounts. As a result, he became a thumb sucker. I was asked again and again if I was too stressed, the implication being that a stressed mommy produces insufficient milk. How do you answer that if you have a 2 year old and a newborn? I think I was about as stressed as could be expected. I was asked about my diet, which was intentionally healthy and full of foods meant to stimulate breastmilk. Every dead end was a relief, but even more confusing. In the end our ‘official’ diagnosis was that my milk, for whatever reason, was insufficient.
With this, Alex as given a prescription for an extraordinarily expensive high calorie formula called Infatrini. We were to mix it in with his food as he was being weaned onto solids and give him one bottle a day, while continuing to breastfeed. All his solids were to have as much butter, cream and cheese as we could get in it.This would increase his diet by a minim of 300 calories every day. No baby led weaning for this kid. He had to eat every spoonful to make his quota. Luckily, he lapped it up.
Slowly, very slowly he started to put on the weight. We met with a hospital dietitian regularly and worked on increasing his caloric intake through his solid diet and decreasing his dependence on the Infatrini. She was incredible and really supportive of breastfeeding. Her theory was that he was so thin that he couldn’t really keep up with his feeds. He’d get tired from the exertion of feeding and would just stop before he’d had enough. If he got up to a better weight, he might be able to feed more efficiently. Why this only manifested after three months was still unclear, but as we progressed he was also growing older and more dependent on solid food for the bulk of his calories so my breastmilk was just an extra bonus for him, deficient or not.
By the time he was 1 year, he was was up to the 50th percentile for weight and near 75th for height. He was average and healthy and very happy. We replaced the specialised formula with regular baby formula for one bottle a day, but our breastfeeding wasn’t going well. He’d get increasingly irritated when I tried to feed him on the left side and eventually started screaming whenever I hold him in that direction. As he got stronger, I couldn’t physically get him into position to feed from the left side. So at a year, we stopped breastfeeding (and dropped the bottle) and switched to cow’s milk in a cup.
Now that he was bigger and growing more vocal (thanks to screaming at the boob) I also noticed that his mouth looked funny. He has big ridges under his tongue. It’s not a smooth basin like mine and I could also detect a slight forking of his tongue, similar to Nate’s after his tongue tie was released. At our last paediatric appointment, the one meant to check all the boxes before he was discharged, I asked the consultant and junior doctor assigned to us if he could have a posterior tongue tie. They were not interested at all in talking about it. I was told by the junior doctor that it was nonsense that a tongue tie could cause feeding problems (which I know for a fact is not nonsense, having had a child with tongue tie and serious breastfeeding issues). I was told again that Alex was normal and healthy and all the weight loss was down to my breastmilk being substandard.
I left the appointment delighted to be discharged, but pretty upset that the doctor completely disregarded my concerns about his tongue. I decided to search online and found another child with exactly the same experience. You can read about Joey at Joyful Abode here. She felt the same flickering tongue while feeding–the tongue quivering out of exhaustion. He was underweight, but happy just like Alex–this is categorised as ‘content to starve’ meaning that they eat enough to satiate themsleves but don’t yet know they need more. Being in the US where people actually take tongue tie seriously, he was diagnosed with a posterior tongue tie and had surgery to fix it, allowing his mother to continue breastfeeding. (She has a lot of brilliant information about lots of things releated to breastfeeding, so check it out) I also take issue with the diagnosis of insufficient breastmilk without any testing of my milk. There must be a way to take a sample (I pumped more than enough) to test the fat and nutritional content. It just seems to easy to put the blame on the mother when she needs so much care and support to not feel responsible for her sick child.
My question was, and still is, what should I do if I have another child. Should I try to breastfeed or is there something wrong with my breastmilk? And if there is something wrong, why? I don’t think it is sensible to say “yeah, your body isn’t doing what it was naturally designed to do, but it’s OK”. Most tongue ties don’t interfere with eating and speech, but it is possible that down the line he could experience problems or pain. I wish I could get a photo of the inside of his mouth without him trying to eat my camera, because it is not normal. Don’t get me wrong, I’m not looking for trouble. I just want to know exactly what’s going on with my son’s and my own body. It’s frustrating that most medial professionals are so cavalier about tongue tie. Imagine if the attitude was the same about some other deformity Oh sure your fingers are fused together, but you’ll get by. You can buy mittens!
Now, a year after being in hospital Alex is eating well and is a plump little fellow. He is physically a completely different baby. I’m trilled that he’s well, but I worry about the other mothers that have to go through this or other kids (especially those without insurance to jump the waiting lists) that might have feeding difficulties that go undiagnosed.
