Friday 2 December 2011

Health Visitors and My Premature Baby - Might Be a Rant

When Joseph was just a week old a little slip appeared through our letter box, announcing that our Health Visitor would be coming to see myself and Joseph at home the following week. I frowned in confusion. He wouldn't be home. Oh well, I thought, perhaps they mean just me. I thought about it some more and a couple of days before the visit rang to let them know that Joseph was born 13 weeks early and certainly would not be home at 2 weeks old. There was no answer, just a machine so I left a message.

I got a phone call about 30 minutes before the alotted visit, the Health Visitor wanted to know whether she should still visit. "Um yes! I have missed my hospital visit with Joseph to see you". The first thing she said when she arrived was "I know nothing about very early babies", so I asked for someone else, she said no one had much experience at all and I may as well stick with her.

Well, at least I wasn't disappointed. Once Joseph was finally discharged we had another visit, and then that was it. My only input was when I took Joseph to weigh ins. Like most mothers, I had times where I left weigh ins in tears. "What are you doing wrong? Why has Joseph only gained this much and not that much?" etc etc. I learnt to be thick skinned, and to make sure I went at a time when I could have a good moan with other mums afterwards.

Then, at 6 months actual we were asked to take Joseph for his 6 month development check. I rang and asked for it at 6 months corrected. They argued "oh we don't see much difference with premature babies" they said. "I'm sorry Joseph was 13 weeks early, he's going to fail if you do it now", I managed to win that one, he still failed at 9 months old, for not being able to sit.

With weaning, my Health Visitor had no idea, she wanted me to wait til 6 months corrected even though the expert literature advises weaning on actual not corrected age. It was just so confusing. I am actually still waiting for her to visit, she was going to come and help me with weaning and give me advice and support. I guess that ship has sailed!

And now, 2 and a half years on, it's happened again. I requested a 2 year development check, which is pretty standard, they are so busy they didn't do it until 2 and a half, just a few weeks ago. Again, he has failed, this time for walking, the Health Visitor was disappointed with his walking, his gait is not what she would expect in a 2 and a half year old. She said he needed appliances, exercises and basically implied I had been neglectful by not pusing harder earlier.

I just feel like banging my head in frustration. Joseph is not a normal 2 and a half year old. Well, he is a normal 2 and a half year old, he loves the Octonauts, Thomas the Tank Engine and dinosaurs. He loves to eat gingerbread and chicken nuggets and chips and couldn't give a hoot about vegetables. He throws tantrums, the next minute he hugs and kisses you, so yes he is a normal run of the mill toddler.

But Joseph was born at 27 weeks. He will have some delay, it's no surprise to me, and I don't think it should be to a Health Visitor. To put her mind at rest, I agreed to take Joseph for a follow up at orthotics yesterday.

And guess what, Joseph walks funny as he has only been walking 6 months, no action required.


I just feel disappointed. When Joseph came home I was terrified, I had no idea what I was doing, and was looking forward to the input of the Health Visitors, and have been very disappointed. The team want me to go fortnightly for weigh ins so that they can keep an eye on us, and really, I wonder whether I should just be non compliant and see what happens.

I'd love to hear your stories, especially positive ones!


  1. Hi Kylie! :0) I know where you're coming from. J was 12 weeks early and this threw both my midwife (who asked 3 days after J was born "when will he come home?") and health visitor (who was no where to be seen untill we came home) My midwife who came to the house to see me the day after I was discharged left me a rather rude note as I was over at the hospital with my Son! It read, "I have come out to see you but you are not in. Your neighbour informs me your child is in hospital. Please get in touch so I don't come out again when you're not in!" Just what I needed...... And I still fail to believe she was not informed of my circumstances when she was told of my discharge! My health visitor is wonderful. She came every week until recently, for weight checks. She now comes once a month. She had admitted tho she would be a "go between" between myself and a more knowledgable health visitor, our Cystic fibrosis nurse and our Dietician. She has been great and anything she doesn't know she finds out for me. However, having missed my antenatal clases by over a month I could've done with a bit more suport and practical advice. I was a mess and genuinly worried that if I looked like I didn't know what I was doing, someone would take J away! So I didn't ask. She assumed that because J was 5 months old, I'd been taking care of him that long......Infact I had been shown very little in the hospital and feel like I fell through the cracks!

  2. Hi Kylie. Excellent blogpost, as always.

    I was recently asked to bring our (8 week premature) daughter to the local health centre for a check up (she is about 7 months uncorrected). What I didn't realise was that I was going to be asked very personal questions about her health, and questions about my mental health, IN THE WAITING ROOM!!!! And within earshot of other parents. I was too shocked to complain, and just wanted the whole thing to be over and done with, but I will certainly make it clear next time that when they want to review my daughter, it will have to be in a private room and not in the friggin waiting room. Oh, and afterwards, the health visitor stood up and bluntly went 'what is wrong with your face?' as I have a facial disfigurement. I am not impressed and will be much tougher next time.

  3. I just wanted to write something positive as I had a very good experience with our HV. Ethan was also born at 27 weeks and our HV use to be a neo natal nurse so she was very supportive and could answer most of my questions. Anything she couldn't help with me she asked SCBU. She visited me alot just after ethan came home (once a week for about a month, then once a month for a few months, now 6 monthly. She doesn't really need to anymore but I think she likes to see how Ethan is getting on.

  4. Hi Kylie, I must say we had a similar experience to you. Our Health Visitor did come to the discharge meeting at the SCBU but as Blaine was bringing his 02 home with him we were having visits from the Community Nurses once a week and so the Health Visitor decided she would not be needed. She was supposed to pick up where the nurses left off when Blaine was abaout 7 months old but we didn't actually recieve a visit from her until Blaine was two when she freely admitted to knowing zilch about premature babies.
    As for weigh ins, I used to take Blaine across to the local Sure Start center for the weekly Heakth Visitor slot and they were awful. I too left on many occasions feeling rubbish and like an alien. They had no idea, looked petrified when they saw us and didn't even know where to mark on his weight line. Anything at all I asked them. even the simplist question, they would just say 'ask your consultant'.
    What a shame our Health Visitors are not trained well enough or concerned enough to do some research if they are given a premature baby to monitor. In my job as a teacher I can't just say 'oh I don't know how to teach this or deal with this child' I make sure I find out.

  5. I think it's a shame that each area doesn't have at least one specialist HV, I think that would make a lot of sense, and with the preemie birth rate raising all the time, I think it's necessary.

    The plotting on the line should be easy, but I had it so many times "what does -13 mean?" It means he's 13 weeks early. "Oh I didn't know they could survive born that early" - an HV for god's sake!

  6. Oh how lovely to read a positive story, and can we clone her? I am so pleased you had a good one.

  7. Vix, you should make a complaint - not whingy complaint but just feedback to be given to her by her supervisor. Those two things, questioning your mental health in front of others, and the disgusting comment about your face, are worthy of raising.

    I can feel my blood pressure going up!

  8. I think there must be some sort of issue with their notification system, because that happened to me too, I am so sorry that happened to you, especially in such a scary situation.

    I am glad she has been good, and I think the fact that she knows her role as a go between and doesn't try to get involved in things beyond her remit is a good thing.

    Oh bless your heart, we had a lovely scbu nurse who made sure I knew how to take care of Joseph, it's a shame you didn't have the same, and felt too frightened to ask.

  9. Rosierexbrighton17 January 2012 at 09:03

    Hi We had a similar problem too.My daughter was born at 24 weeks came home on oxygen.My health visitor was responsible for weight,development and nasal cannualas.She decided because Ellie had contracted MRSA whilst in hospital she would just drop off a set of scales and leave me to it.I couldn't go to clinic because they banned her as an infection risk.I was desperate for advice i got postnatal blues,had no idea when to wean,development was slow and still is.I found all my support on Bliss and if it hadnt of been for the parents there i think i would off cracked up.Health visitors forget the risk you are at - depression is easy to get as i struggled to cope with what i had seen with my daughter and how to explain it to my other kids.My son was 7 when i had her one morning he saw me having to give her CPR and it really scarred him.He now is 11 and suffers from depression last year he had to be convinced down off a roof with a knife by police.We really were not coping just running in zombie mode.My other daughter had also been rushed to intensive care and nearly died a couple of years ago.It had been alot for us and we just didnt see the impact on our family.Thankfully my son has a wonderful school now and amazing support services thanks to my GP but my health visitor just never seemed interested.All i can say is thank you to all the amazing mummies and daddies on bliss.xxxx

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