I will start at the beginning, when Billy was a few days old. I had a really lovely midwife, who was desperate to help me determine why Billy would not stop screaming all the time and seemed to be struggling to feed so much. After breastfeeding him for 40 minutes during a consultation with her, I popped to the loo. When I returned I found her apologetically feeding Billy some formula that I had brought with my husband. She said, “He was just screaming so much and we didn’t know what to do.” I had started topping his feeds up with formula, thinking that he just wasn’t getting enough milk from me. She then suggested that the NHS had missed a tongue tie and gave me the names of a few private consultants who could help, informing me that the NHS wouldn’t help with a tongue tie. I really think if there was more awareness in the medical profession about reflux that Billy’s reflux could have been diagnosed here, in the first week of his life.
The next step was a private lactation consultant, who cut Billy’s tongue-tie. She gave me lots of advice on breastfeeding and over the next two weeks we persevered with breastfeeding, which was a nightmare and involved feeding him as long as we could both manage (about 20 minutes), then expressing milk and finishing Billy’s feed through a tiny tube from our finger that was supposed to help the tongue tie scar heal and the tongue tie not to re-grow and help him continue to breastfeed, as that was what I wanted to do if at all possible. After two weeks of this and Billy’s feeding getting no better I decided to give up breastfeeding. It was such a hard decision but the minute I did I felt so relieved. I was just in too much pain and was up all night feeding and expressing milk and getting virtually no sleep at all. Billy was still struggling to feed: kicking, arching his back and crying all the time. When we went back to see the lactation consultant she suggested that he could have reflux and that there was a link between tongue-ties and reflux. She also suggested that he could possibly have a cows’ milk intolerance.
This was when I then first approached the GP. Billy must have been about three weeks old. I was given Gaviscon. This didn’t help at all. I went back very soon after and asked if we could try something else. We were prescribed ranitidine. Still no improvement. Billy just screamed and screamed all day long. I went back again a few days later and asked if we could try Billy on a different formula and suggested to them he might have a cows’ milk intolerance. I saw a different doctor as the previous two I had seen were very patronising and would say things like, “Your baby hasn’t got reflux, I saw him lying on your knee,” and, “Oh, you again!” I kept feeling like I was more likely to leave with antidepressants for me rather than anything to treat Billy’s reflux. I felt very nervous going to the doctor but just knew that something really wasn’t right with Billy. The doctor I asked about the cows’ milk intolerance was very approachable and actually listened to me and was willing to give it a go. Within about two days of Billy being on Nutramagen he was like a new baby. He slept almost continuously for the next few days on and off, like he had to catch up on all the lost sleep since he was born.
I knew things were not totally under control though as he still had reflux episodes where he would obviously have some acid come up and back down again (silent reflux) and then would scream for quite some time. Sometimes he would be sick but not always. Also whenever I picked him up out of his cot his hair was soaked in sick and the sheets were soaked. I asked the doctors if we could review the dose of ranitidine and/or try him on losec. This was not received well. I was told, “I can’t stop you if that’s what you really want but I don’t see the point.” We moved him onto losec MUPS but on the lowest dose as I was too nervous to bring up the subject of dosage as the doctor I saw didn’t believe he even had reflux. It was difficult to see the doctor I had a better relationship with as to get an appointment at short notice you have to just go with whoever is available, otherwise there is a long wait for an appointment.
When Billy was about four months old we saw the dietician, who was very helpful. She said it sounded like he was still reacting to some of the milk protein in Nutramagen and suggested a totally hydrolysed formula and put in a request for the GP to prescribe Alfamino. This was an awful formula, which just made things ten times worse and gave Billy terrible diarrhoea.
Finally, I was so fed up I took Billy to see a private paediatrician, who prescribed Neocate and trebled the dose of losec. I took this prescription back to the GP (luckily, the one I found more approachable), who said that it was against policy but he would prescribe it immediately on the NHS for me. Apparently if you get a private prescription you are supposed to pay the first four weeks and then the NHS will pay. I also asked if we could be referred to see an NHS gastro paediatrician as he would need to be monitored in the future and his medication dose altered as he grew. We were referred to see a general paediatrician at Chelsea & Westminster Hospital, who told us, “Great. Everything is under control,” and said he would liaise with the gastro paediatrician and be in touch. That was the last I heard. I chased this up when Billy was about one and have an appointment booked now for October, finally.
Generally, I have found the doctors to be of little help and very dismissive of reflux, except the private paediatrician. It has been a real fight to get Billy treated and has involved a lot of my own research and perseverance and constant pushing to get things under control. The best help and advice I have received has been from the lactation consultant when Billy had his tongue-tie cut (privately funded), from Alison Scott-Wright (also privately funded and who has guided me step by step all the way and given me the confidence to keep going back to the NHS doctors) and from the NHS dieticians. For many, many months I would lie awake at night, absolutely furious with the GPs and the lack of support I was offered and how I was made to feel and, most importantly, that the obvious pain that I was describing that Billy was in was ignored. Apparently, “Babies cry,” and this was all just normal behaviour. As I was a first time mum I think this was even worse as I almost believed them, until I would observe other newborns sleeping (so much!) and crying (so quietly!). Those that were with me when Billy had a reflux episode were totally gobsmacked. My sister witnessed one where he screamed inconsolably for about two hours at her house. There was absolutely nothing we could do to calm him down. She asked if that was what it had been like all the time in the first month or so and I said yes. She then understood. Most people don’t and never will unless they have been there themselves. It is heartbreaking to see your child in so much pain and to feel helpless.