My name is Lily-Sue, but my mummy calls me Munchkin (or 'Munch' for short!) I am 8 years old, and this is where my mummy will help me write all about all the fun things we do together. I hope you enjoy reading about the adventures of my mummy and me, Munchkin, with the occasional appearance from the siblings - Beastie and Plumlet.

Thursday, 6 March 2014

Oh, dear NHS ... And you were doing so well!

Tuesday, 4th March, 2014. A long awaited date. This was the day we were finally off to our hospital appointment with Baby Plum. An appointment we've been eagerly longing for and dreading all at once. And the day was going so well, considering, until ...

... Let me start at the beginning ...

Monday, 23rd December, 2013. That's the one - the day we welcomed Baby Plum into the Munchkin Patch. Our beautiful baby boy was finally here after what had been a trouble free pregnancy until the 3rd trimester. Then the problems started. The hospital visits, the tense, tearful calls to NHS Direct, the unexpected and unplanned admission to hospital, the discomfort, having to remove Munchkin from nursery for the last couple of weeks before Christmas to save myself and baby from the unthinkable, the worry-filled sleepless nights, the stress, the tears, the worry ...

Pretty standard for some during pregnancy, I know. But I'll put my hands up. I struggled. There, I said it. But it was ok. I had R. The most wonderful midwife I could ever wish for. She was perfect. Calm, reassuring, positive, reliable, clear, encouraging, honest and a full bank of knowledge. She had an answer for every question I had, and she was never wrong! I felt so lucky to have her taking care of me and Baby Plum, and the girls loved her too. They were with me for every antenatal check, and she would chat to them, laugh with them, always address them by their names and involved them in everything that was appropriate. 

What more could an expectant mummy want ...? 
Cheeky, sneaky NHS ... You kept this one well hidden!!
As I said, it was all going considerably well.

Then the day finally arrived. Arriving at the hospital, the staff were amazing. I gave birth to Munchkin and Beastie Boo at this same hospital, and have always been looked after incredibly well. This time seemed no different. The difference was, Plum's delivery was planned. As a result of the traumatic births with both girls, Plum needed to be delivered by planned Caesarian Section. I met the Surgery Midwife, the Consultant, the Anaesthetist, as each explained their roles to me and the risks involved down to the smallest detail. I felt safe with each and every one of them. Even when I had a complete emotional meltdown at the door to the Operating Theatre, I was well supported and never once felt belittled or ridiculed for my nerves. They went on to successfully deliver the most perfect little boy I have ever set my eyes on. Our Baby Plum. 

NHS ... You got it right again! 

Some time spent on the Close Monitoring Unit meant we could receive extra medical attention and more regular, detailed observations. And this was what happened, until the first night of our stay. Baby Plum seemed so determined to breast feed.More determined than either of the girls were. I was over the moon at the notion that I was finally going to be able to successfully breast feed. It felt really good ... Until Plum wanted his late evening feed. He wouldn't latch. He really wanted to, he was getting frustrated that he couldn't, but he kept trying so hard. There was something about his determination that kept me positive. He was more interested in breast feeding than either of the girls were and this made me want to persevere. I remembered all the things I was shown by the Health Visitors who helped me when I was struggling to feed the girls - the most effective holds, the comfortable angles, but something wasn't right. He was positioning his mouth just right, but still searching for the nipple. After hours of trying, and getting minimal support through the night, I was in a very emotional state. I was still attached to a drain and a drip which restricted my movements, yet the night shift midwife that was attending me offered very little help. I asked her to help me encourage his latch, but her idea of helping was asking me what side I wanted him. She would then pluck him from his crib, put him on my desired side of the bed, and leave me to it. She would leave me tackling the spaghetti-like wires and tubes, so that I could wrestle him (and me!) into a comfortable position. But it wasn't happening. When he started to make 'grunting' noises like he was gasping for air, she returned on my call, took a quick look into his crib and mumbled these 'reassuring' words to me ...

"There's nothing wrong with him. The doctor looked at him earlier and said he's fine"!!

Are you actually for real??!

From that moment on, I did my very best to avoid having to press that button for assistance until I was sure the staff had handed over for the morning shift. There are some words of wisdom I could really do without! I was made to feel like I was bothering her. Like I was disturbing her from her duties, which apparently, I wasn't a part of. I continued my hospital stay, feeling more comfortable with the daytime staff on CMU who seemed more attentive. Maybe this was the case, maybe moods were just high because it was now Christmas Eve. I'm not sure. 

I was moved to the Post Natal Ward, and continued to persevere with his feeding. What else could I do?! Christmas Day, and I was discharged from hospital. The Man came to get me with an excited Munchkin and Beastie Boo in tow, and we could take our Baby Plum home to start this amazing new chapter of our lives. Christmas Day was pretty much written off, but we had decided we would celebrate Christmas Day on Boxing Day, for the sake of the kids.

Sorry, Munch. One day you'll read this. Yes, Christmas Day 2013 was really Boxing Day. Think we pulled that one off quite well, didn't we? This doesn't mean it's ok to fib!!

Later that day, we had our routine midwife visit. R wasn't on duty, so I had another midwife visit us. She was nice. Seemed friendly and knowledgable enough. Then she dropped the bombshell. The second she lifted him from the cot, she saw it.

"Did they do the tongue tie referral for you at hospital ...?"

Sorry ...? The what ...?!

Apologies for the unpleasant photos. The only time we see his tongue like this is when he cries! 
Baby Plum was showing quite a prominent case of tongue tie, and the Paediatrician hadn't even noticed it! What else had she missed during her thorough discharge examination?? I hadn't noticed it. I wouldn't have known what I was looking at. But then I am a mother - not professionally medically trained and qualified like she was meant to be. And certainly not paid to detect and diagnose these conditions! Once the initial shock had subsided, she promised to complete the referral for us and assured me we would hear via either letter or phonecall of an appointment within around 2 weeks. She apologised that 2 weeks was a long time, but explained that the Christmas period would slow the process down slightly. 2 weeks wasn't long, so I wasn't too concerned.

Until 2 weeks turned into 3, which turned into 4. I chased up this referral. Got little joy from the hospital, so spoke to my Health Visitor who chased it up for me. So when she came back to me to confirm that Plum's birth had been registered, and told me that there was no record of a referral for him, I was angry. I was really angry.

During this time, I had been forced to abandon breast feeding Plum. He just wasn't latching successfully and I could now see why. He couldn't. And the whole time I thought there was hope around the corner, someone hadn't done their job properly. Maybe the referral hadn't been done like promised. Maybe it had been misplaced amongst reams of paperwork in some back office. I don't know. All I did know was, we were now looking at another fortnight or so wait for an appointment.

Again, very little I could do!

Just over a week later, a letter finally arrived with an appointment for Plum. Tuesday, 4th March, 2014. Ok, so we still had a few weeks to wait, but at least we had an appointment date. There was an end to the struggle in sight. Plum was still finding it difficult to feed, and these difficulties were becoming worse as he was becoming hungrier. He just can't get a proper seal on his bottle teat, meaning with every gulp of milk, he is also consuming a gulp of air. Every feed was ending the same way. Plum would scream in pain. You could feel the wind churning around in his little tummy. His tummy goes rock hard, his face screws up in pain, his knees shoot up to his chest, and the screaming starts. This was often followed by him bringing up half of his feed at some point too. But we could deal with it, as it would all be over on the 4th March.

Or would it ...?

Monday, 3rd March, 2014. I was busy preparing myself for the following day, making sure I had someone on standby to collect Munchkin from nursery in the event of us not being back in time, calling the hospital to check if there was anything we needed to bring with us for our appointment ...

"No, just bring baby and yourselves" ...

No problem, we can do that. Plum fed just before we set off out. So we got ourselves into the car, me, The Man, Plum and Beastie Boo, and made our way to the hospital. Not our local hospital though. We had to drive 20 miles to another hospital. We didn't mind - it was for a good cause, and we would travel a million miles if we had to for the sake of any one of these kids. 

After visiting one department, being booked in and being directed to another area, I sent The Man into the surgeon's room. I'm useless with things like this. Onto baby #3 and I'm only just coming round to having to take the kids for their vaccinations by myself. I opted to stay with Beastie in the toy-filled waiting area instead, giving The Man strict instructions to bring Plum out the very second he's allowed to so I could intervene with cuddles! A couple of tears from me and off they went. 

About 10 minutes later, they emerged from the room. The Man didn't look happy. And Plum didn't look like a baby who had just had his tongue snipped. It hadn't happened. 

"Have you got his bottle there ...?" 
... The Consultant waited for The Man's positive reply. 

We hadn't brought a bottle. He wouldn't take one as he had fed before we left and we knew we would be home before he needed another. So no, he didn't have his bottle there. That was it. The consultant was apparently not happy to carry out the procedure without a bottle there. Why? Because they measure the success of the operation by inspecting their latch on the bottle afterwards. Carrying out this procedure without a bottle was apparently "going against regulations". So, a pretty essential thing to bring along then? Maybe something that should have been put in the letter that contained our instructions for our visit? At the very least something that should have been told to me when I phoned ahead the previous day to prepare myself. I asked if I needed to bring anything. They told me no!!! Surely, if something is a fundamental part of the procedure, it shouldn't be left to the assumption that we would bring a feed with us? 

"Just go out to the desk and make another appointment", we were told. Oh, as simple as that then, yes? When we have been waiting since 26th December for this appointment, we should just go make another? Before I had a chance to digest any of this, the next patient had been called in. A woman with a 12 day old baby boy with the same condition. His hadn't been detected at hospital either. And the mother who had been in before us with her nearly 2 year old daughter - hers hadn't been noticed by any medical or health care professionals either. So we go to the desk to make another appointment. 

"You need to go upstairs to rebook. We can give you their number to call if you want to phone them instead, but I'll warn you ... They're not very keen on answering the phone up there"!

Seriously ...?! 'Not very keen on answering the phones' ...?! Am I actually hearing this right?

I took Plum, in my arms, upstairs to rebook, not fancying the idea of sitting on the end of the phone, ringing a number that doesn't get answered.

"We don't book the appointments here. It's all done centrally. When your notes go through and they realise the procedure hasn't taken place, they'll send you another appointment in the post"!

Out through the door, grab a coffee, into the car and home again. Furious!

So now we are home again. Plum is still tongue tied. He is still struggling to feed and writhing with his wind pains. I am still without that hope around the corner. And for what? Because of a breakdown in communication? Because someone has failed to fulfil their professional duties? Because people just don't care? I'm inclined to tick all of the above. 

So, to the NHS who I feel have completely failed us in this situation ... 

Why, when your staff fail to detect and diagnose this condition in the first place, are you not ensuring parents are appropriately equipped when attending a procedure as important as this? It may not be a major operation to you, but to a mum or dad who is having to sit up at all hours of the day and night, consoling and comforting a baby who is in great discomfort and pain due to their inability to feed properly, this is big! To new parents who have to sit with their tiny baby whilst he screams and sheds real tears when he should be settling into a comfortable sleep after a 3am feed, this is big! To me, The Man and Baby Plum, this is big!!! So why is it so insignificant to your hospital staff, and to whoever it is that issues these appointments? Why aren't there appropriate measures put in place to provide the correct equipment for these unsuspecting, uneducated parents, if you are not willing to provide the correct information before such a procedure? Why do you continue to let people down? 

Oh, and why on earth do you employ reception staff who are "not keen on answering the phones" ...?!

As I said at the beginning of this post ... Things were going so well. Obviously a little too well. 

NHS ... You've completely failed us here!


  1. Darling. I want to come straight over and hug you all.

    I know how hard this build up has been and then to be let done yet again.

    I've tears reading as I know just how much you dreaded that appointment and now need to do it all again.
    Here to help in any way I can with your complaint! Keep strong and keep fighting xx

    1. Thank you hun. I'm just hoping they take my complaint seriously. So far, it's not looking good. I have had a reply to my email to PALs asking for a contact number so they can call me, which I replied to, but no phone call yet. Then I had another email from someone else in PALs saying I should call them or provide a contact number so they can call me. Pretty much sums up their communication skills really, don't you think?! A case of the right hand not knowing what the left is doing it would seem!

  2. It is shocking how they have treated you and your family!! I'm having problems at the moment to do with my youngest skin condition, promised a referall that still hasn't come through 3 months later, so I understand to a degree how you feel!!

    I hope another appointment comes through quickly, you shouldn't have been made to wait in the first place, absolutely ridiculous that they couldn't just provide you with a bottle seen as it was their mistake that you didn't have one in the first place!!!

    ((hugs))) xx

    1. I really feel for you and your little one and hope a referral is made soon. I wish these things were treated with a little more urgency, especially when the patients are so little. I mean, I don't understand how I had a referral made with an appointment weeks in the future, when the mother there going in after Plum was with her 12 day old baby?! How do these appointments get prioritised?! It seems backwards, that's for sure.

      Thanks for your comment hun xx

  3. Totally unacceptable. Cant believe their slapdash attitude. Fingers crossd for speedy appointment now x

    1. Thank you xx Its the flippant attitude that gets me too. I was feeling so positive about the care I'd received with Plum, and this has just destroyed that :( x

  4. Shocking. Just truly shocking. A baby who cannot feed properly and who is uncomfortable - surely a priority case? Something that you have had to build yourselves up to, that you were mentally prepared for, to be let down in such an appalling way? Disgraceful. They should be ashamed of themselves.

    Big hugs. I hope the new appointment doesn't take long to come through anf that little man gets the help he needs.

    1. Thank you xx I'd have thought they would treat it with a little more importance than they have. Plum is 2 months now and still struggling to feed. How's that fair, eh?!

  5. I am so cross and furious for you all! How utterly disappointing and totally unnecessary! Poor Plum. This post has made me very sad and very cross and I'm so glad you have written it! Not that you should have needed to! I really hope you are making a formal complaint and that plum gets the attention he needs from the professional like yesterday! Disgusting!! Much love xx

  6. I'm still horrified at this! Poor Plum it is awful that it is an operation that is easy and more convenient the younger they are yet you are still waiting! And I know our local hospital have teats for bottles packaged up ready for parents to use for newborns so if it was that important could they not use something similar just for them to see the latch on babies after operating?! Makes absolutely no sense to me whatsoever. Really hope you get some answers and an apology for the poor treatment!

  7. This is awful, I'm so sorry you and your child have been subjected to this. Really cross for you and hope it is resolved very soon.