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Prematurity


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Hi. I have one very anxious mum who has a lovely boy who is approaching 3 years old, and who was born at 28 weeks, and also had meningitis as a very young baby.

 

He has been with us (Sessional pre-school) since he was 2, exluding a spell from June to September, when he didn't come as his mum felt he wasn't ready. Since September he has settled but can't manage a whole session without falling asleep. So, from November he has been coming 9-11am 3 days a week rather than 9-11.45 twice a week which has helped. Apparently his sleep patterns are a complete nightmare at home). During sessions he does exhibit lots 'unusual' behaviours (which we have fully documented) including not giving eye contact but I won't list them as I would like your experiences of prematurity without clouding your thoughts with my opinions.

 

Basically, this week Mum has had the health visitor around to talk about the sleep issue and the health visitor says she's going to make a referral to the paediatrician as she has noticed some 'unusual' traits including the lack of eye contact and also wants the speech therapist involved. Clearly Mum is frantic with worry. She is paranoid about autism as she has worked as a care assistant in a number care homes. I want to reassure mum as much as I can and help her remain calm and objective about the process of a referral whilst helping her see that the process can be constructive and can help 'iron out' some of the quirks her son has and that sometimes that's all that's needed.... That could be hard given that she wants a letter from me for the health visitor outlining his development, but that's another issue!

 

If it turns out that there is more to the situation then we can cross that bridge when we come to it, with the added benefit of early intervention and outside agencies and experts on board already.

Please can you tell me your experiences of developmental delay as a result of prematurity and also when prematurity causes more serious problems. Remarkably this is the first child we have had in 13 years and I would like to know more so I can better support the family.

Thanks!

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Hi. I have one very anxious mum who has a lovely boy who is approaching 3 years old, and who was born at 28 weeks, and also had meningitis as a very young baby.

 

He has been with us (Sessional pre-school) since he was 2, exluding a spell from June to September, when he didn't come as his mum felt he wasn't ready. Since September he has settled but can't manage a whole session without falling asleep. So, from November he has been coming 9-11am 3 days a week rather than 9-11.45 twice a week which has helped. Apparently his sleep patterns are a complete nightmare at home). During sessions he does exhibit lots 'unusual' behaviours (which we have fully documented) including not giving eye contact but I won't list them as I would like your experiences of prematurity without clouding your thoughts with my opinions.

 

Basically, this week Mum has had the health visitor around to talk about the sleep issue and the health visitor says she's going to make a referral to the paediatrician as she has noticed some 'unusual' traits including the lack of eye contact and also wants the speech therapist involved. Clearly Mum is frantic with worry. She is paranoid about autism as she has worked as a care assistant in a number care homes. I want to reassure mum as much as I can and help her remain calm and objective about the process of a referral whilst helping her see that the process can be constructive and can help 'iron out' some of the quirks her son has and that sometimes that's all that's needed.... That could be hard given that she wants a letter from me for the health visitor outlining his development, but that's another issue!

 

If it turns out that there is more to the situation then we can cross that bridge when we come to it, with the added benefit of early intervention and outside agencies and experts on board already.

Please can you tell me your experiences of developmental delay as a result of prematurity and also when prematurity causes more serious problems. Remarkably this is the first child we have had in 13 years and I would like to know more so I can better support the family.

Thanks!

 

 

Hi there LJW,

 

I have had experience of prematurity - both with the pre-school and with my sister (now 39 and with learning diffs).

 

Sleep does seem to be a key issue (or lack of), but there are methods which parents can learn to use. One child I have worked with had visibly behind gross motor skills- balancing was difficult, running was fine, but falling over was frequent and this reflected a child four to six months behind the actual age. Speech had required a little help from a HV, with S/F ST/SH/ING/sounds requiring extra work. concentration was very short and help was needed for the child to sit still during register or to stay working at an activity. More than anything, the lungs had suffered damage and this little one required close supervision when they had a cold or cough, they did show asthma like symptoms, which could be very frightening.

 

Before you enter into any written communication with other professionals, it is important to make sure you have mum on board and try to help her relax, it is hard, maybe try to point out that many, many children access speech therapy at an earlier time in thier lives now as there has been proof that it is more beneficial at this age, also that the Health visitor is there for mum to contact with her questions too and that she will be working with you as a team.

 

I have invited various Health Visitors in to observe children (with mum's written consent) and this is much better than you having to write a report to the HV as you will be able to have small discussions, meet the HV and ask for a copy of their report to go in the child's file. Offer support to mum, going to meetings with mum and the other professionals involved is a great way to offer support and make good links too.

 

Many of the difficulties suffered by premature children are overcome with time.

 

Maybe consider getting your Area Senco involved asking mum for permission and explaining she will be invited to all meetings too.

 

More than anything, the key is to keep mum communicating, keep mum onside, make time for her and not make any comments "I'm sure everything will be fine" - was one which I used in my early days and got stung by! -How silly was I-guilty feeling still!

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Thanks very much fo that, Cirhossa1. Its good to hear other people's experiences as a child with 'prematurity' issues is totally new to me, although supporting parents sensitively and constructively definitely isn't. We are totally committed to the 'whole family' approach in our setting, not just the child. All the staff are mums who, invariably, tend to imagine ourselves in the parent's shoes - what would I be feeling if it was me who was facing what she is facing at the moment - a little empathy goes a long way!

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Thanks very much fo that, Cirhossa1. Its good to hear other people's experiences as a child with 'prematurity' issues is totally new to me, although supporting parents sensitively and constructively definitely isn't. We are totally committed to the 'whole family' approach in our setting, not just the child. All the staff are mums who, invariably, tend to imagine ourselves in the parent's shoes - what would I be feeling if it was me who was facing what she is facing at the moment - a little empathy goes a long way!

 

Sounds like you really have some great staff and concepts on supporting. Golly, what a terrible thing prematurity is - my mum bought my sister home aged 4.5 months in a cardboard box with blankets and was told to keep her near a radiator for warmth and to watch for lumps in the bottle as she could easily be choking! All the neighbours thought she was new born, not 4.5 months. 38 years on, my sis still chokes on her food and we've had a brain scan done, which has shown part of her brain is absent! I think of her as my little sis, but I'm the little one! x

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You're right about the lungs issue in this case- he really does suffer badly with the slightest colds and has a special nebuliser for his inhalers which can be very scary! Mum does tend to keep him off at the slightest suggestion of a bug which helps. If only more families kept children at home until they were well............ but that's a different issue!

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