We have asked for our Mums to share their stories, things that relate to motherhood, birth, pregnancy, all things that may interest. you lovely Mummas…
Here is first up, the lovely Pip & Alex’s story…
“My baby doesn’t drink! I don’t mean he’s fussy with a bottle, or he refuses the odd bit. I quite literally mean, my baby does not drink. The last few months in particular I’ve learnt what it’s really like to fight to get Alex the help he so desperately needs!
Alex has always been the most sweet natured little boy, but he has never really had it easy. When he was a matter of weeks old I started asking the doctors if his breathing was normal. My gut instinct said something was wrong but I was reassured that all was fine, and we got on adapting to life with two under twos. In the following weeks I returned to my GP frequently, his breathing developing a sound as if he was snoring when he was awake, but louder and just really wrong. We discussed whether he was dairy intolerant like my daughter and I adapted my diet accordingly, craving all dairy like mad. Then on another visit, where I was still insisting something was wrong but to a different GP, he agreed with me and had seen the same symptoms before. We were sent straight to hospital where Alex was monitored. The doctors explained to me that his windpipe was sometimes going floppy when he breathed, like sucking through a wet straw and the horrendous noise was called stridor. He was diagnosed with laryngomalacia and we were told to contact outpatients if his breathing became worse, but he would grow out of it as his cartilage hardened, by the age of 2.
Within a few weeks, during his stridor episodes, which were becoming much more frequent, his chest would cave in with each inhale and suck into his rib cage, his lips going blue. I went to my GP for the outpatient referral who said to ring 999 if we were concerned. “Don’t drive him to hospital yourselves in case he stops breathing while you’re driving”. I had known Alex’s condition could be serious but it suddenly seemed overwhelmingly real. As I walked home, pushing Alex in his pram, his chest recessions were the worst they’d ever been and the blue around his mouth darker. It was mid summer, but his hands and feet were freezing, another symptom I had been warned about. Could I really ring for an ambulance whilst walking home from the doctors? I thought through all my options and decided to leave it ten more minutes and see how his breathing was then. As the minutes passed, my husband and I watched him like a hawk but there was no improvement and each breath was a real struggle. We made the call. Moments before the ambulance came his breathing returned to normal and I was overwhelmingly relieved. The paramedics checked him over, and he showed no signs of the distress he’d been in moments before. I wondered whether I’d made the right decision to ring 999, was I just being paranoid, but the situation could have easily deteriorated further and there had been no way of knowing how he would be. We were taken into hospital for observation and discharged later that night.
Through all the worry, life continued as normal. We were still a family with a baby and a toddler who had decided, at not yet two, that she was ready to be potty trained, and that brought mayhem of its own. I think the whole family had been worried about how our strong willed, independent little girl was going to react to being a big sister, but she had surprised us by how well she had accepted Alex and considered him to be “her baby”.
With Alex’s floppy airway, we were terrified to let him cry in case it made his breathing worse. He was up for hours every night and when he did sleep for a few hours I would be terrified something had happened to him. Between the lack of sleep and stress I was utterly exhausted, and experiencing huge levels of mum guilt that I was letting Ava down with so much focus on her little brother and so little energy to give.
After some delays caused by errors with the referral, making me to go slightly ‘Tiger Mum’, Alex was seen at the Evelina Children’s Hospital in London by the most amazing ENT consultant who put us at ease and within weeks of our appointment was operating to see what was going on. He confirmed Alex did have laryngomalacia and also a very mild form of tracheomalacia which is where part of the trachea goes floppy in the same way his larynx did. The conditions combined meant that actually his laryngomalacia wasn’t as bad as we had thought and we were told we could let Alex cry without fear of awful consequences.
We moved Alex into his own room and settled into a bit more of a routine, worrying less now we knew more about his condition. Life was pretty normal, or as normal as it ever can be with a baby and toddler, with the exception of Alex having developed horrendous constipation that went on for weeks and weeks. I kept trying to get Alex to take a bottle so I could stop breastfeeding but he just wasn’t interested. I’d initially planned to stop breastfeeding at 6 months but with his breathing problems and breastfeeding settling him so easily, further months had passed. At ten months old, as I was about to return to work I bit the bullet and over a couple of weeks at the start of the year, I dropped a feed every couple of days. I couldn’t believe how stubborn he was being. As I continued dropping feeds he was just waking more through the night and trying to have the feeds then until he wasn’t having anything during the day and was then having feeds every few hours all night. Enough was enough and I stopped breastfeeding.
Alex didn’t drink! Nothing. Literally, nothing. I thought he was just being stubborn and he’d give in, the internet seemed to think so too, so I persevered and my milk quickly dried up. He was having some milk on his cereal and he would demolish Ella’s kitchen fruit pouches in seconds but that was the grand total of his liquid. We tried every cup and bottle with every liquid at every temperature. No success. I was at an utter loss as to what to do. I tried adding thickeners but they were flatly refused. I asked the health visitor who also thought he was just being stubborn and would drink soon, my GP thought the same. After a fortnight I was starting to think something was wrong. After three weeks I knew something was very wrong and was desperate for anyone to listen to me. His eyes were sunken and he had huge grey bags under them and he had lost his cheeky spark. He would cry for hours but as the days went by, he stopped crying tears. He could have stayed in a single nappy for a few days and his constipation was causing him agony. Each time I took him to the doctors I was told he was just the right side of the line for needing medical intervention, but he was just surviving off the fruit pouches. This was far beyond stubbornness.
In early April, by which point he would just sit for periods of time staring, I made the heartbreaking decision to request an NG tube, putting a tube up his nose and into his stomach to put liquid through. He was monitored for 24 hours in hospital. I was asked to collect a urine sample, which from a dehydrated baby is virtually impossible, so he spent much of the time naked from the waist down with me chasing him around both the cot and the ward with a small plastic cup, failing miserably to get anything! He drank 50ml of water over 24 hours and it was agreed he needed the tube. I was trained how to use it and discharged with referrals to the speech and language feeding team and the dietician. The difference in Alex was immediate. His constipation cleared up, he looked healthy and his eczema went away. We saw the most wonderful speech and language therapist who gave us some ideas to try and reduce anxiety and began straight away. Alex swiftly became an expert in pretending to drink.
It took a bit of getting used to the looks people gave us. The sympathetic head tilt and smile, marginally better than the stares and points. I had, or rather, I have, no regrets that I asked for the tube, but I do hate that he needs it and tube life does throw a fair few challenges. A snotty teething baby does not make keeping a plaster attached to his cheek easy! In the first few days the tube came out frequently and I was constantly ringing the children’s community nurses who are just the most caring and compassionate team, and the very best of the NHS. My record so far is them being at my door within ten minutes of me ringing to say Alex had yet again pulled the tube out! Our toddler did not react well to our stay in hospital and the NG tube. She found it scary when myself and the nurses pinned ‘her’ baby down as he screamed and I lacked the additional arms to comfort her while they both needed me. We bought her a teddy and fitted it with its own tube and the nurses included her as much as they could, showing her how to test the pH to make sure the tube was in the right place. Her medical training seemed to be beginning young!
My husband and I soon learned to change the plasters whilst the tube remained in ourselves and were only needing help to put the tube back in when it was pulled out, but with a holiday to Cyprus looming, I was taught how to put it in myself. A meningitis scare from my daughter the day before our holiday meant this had in fact been unnecessary, but it has made life easier to be a bit more independent, albeit a slightly terrifying responsibility.
Due to some further referral errors, the dieticians had not heard about Alex and so had yet to be in contact. I won’t go into details as the referral is currently being investigated, but 2 months on we have just seen the dietician who was so lovely and helpful, and Alex is now getting the liquid his body needs, having only been on less than half what he is currently on for the first two months of his tube, which had caused him to become quite unwell again.
We still don’t know why Alex doesn’t drink. It might be linked to his laryngomalacia but we just don’t know. He’s being referred to a more specialist feeding team and we are waiting a swallow study to see if there’s a physical reason, but for now he drinks next to nothing and anything he does swallow has more air than liquid taken in, which we then take out through his tube.
Drinking seems like such a basic skill it is heartbreaking that he finds it so hard, but I hold onto the hope that he will learn how and that in the coming year he grows out of his laryngomalacia. His stridor is currently far worse at night than during the day and I can still spend hours listening to him, scared to sleep while I know he is struggling, but it is getting far less frequent. Every doctor, nurse and specialist have been absolutely amazing, the system just seems so broken in terms of referrals. For now we continue as we are, with my superstar just turned 3 year old now willing and able to help me put his tube back in when my husband is at work, without us needing to call for help. I’m sure every parent thinks so, but my kids really are quite amazing!”
Thank you for sharing Pip xx