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In Brief

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The Funeral

Life After Owen

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What is SMA ?

Jennifer Trust

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In Brief

Friday 10 January - Thursday 16 January 2003
Nicola had a rash and felt little movement from baby. Visited Princess Royal Hospital, Haywards Heath daily and monitored, rash now disappeared, told to expect a big baby and midwife has been marking notes as ‘baby sluggish’ for some time.
Wednesday 12 February
Baby 15 days late.  Told to go into hospital at 7.30 am to be induced but waters broke at 3.00 am.  
Thursday 13 February
Owen James born 10.16 am by emergency caesarean, and weighing 9lb 6oz (4.246kg).
Saturday 15 February
Having trouble breast feeding.
Sunday 16 February
Owen taken away twice for tests as they are worried he is ‘floppy’ and now weighs 8lb 8oz.  He is bottle fed every 3 hours.
Wednesday 19 February
Weight 8 lb 15 oz.  Eventually discharged from hospital at 5.00 pm after more tests.  The paediatrician is worried about Owen's lack of movement in his arms and legs and has arranged for visit to Guys Hospital London within the next two weeks
Tuesday 4 March
Appointment with paediatrician at Haywards Heath, not heard from Guys Hospital. Doctor thinks the problem is Spinal Muscular Atrophy (SMA), he has come across one case before in New Zealand, and explained the condition and that Owen will not live to adulthood.  He will try to hurry appointment with Guys Hospital who will test for SMA
Wednesday 5 March
Looked SMA up on internet and found Jennifer Trust www.jtsma.org.uk especially informative
Monday 17 March & Tuesday 18 March
Nic and Owen stayed overnight in Guys Hospital.  Blood tests were taken which should confirm SMA in 2-3 weeks, also saw a dietician, who recommended Infatrini milk, a concentrated milk supplied ready made in bottles by prescription, physiotherapist and speech therapist.  Owen has been having physio once a week in Crawley or at home and is to continue with these exercises.
Thursday 10 April
To Haywards Heath for results from Guy’s Hospital.  SMA Type I confirmed.  A team of doctor and nurses from Crawley Hospital will now be looking after Owen.
Saturday 26 April - Wednesday 30 April
Took Owen on holiday to Kings Lynn Norfolk for 4 nights.
Wednesday 28 May
Due to Owen not gaining weight a feeding tube through nose down to stomach was fitted.
Thursday 29 May
Tube taken out as it was causing Owen a lot of distress.
Sunday 1 June
Owen’s christening.
Tuesday 3 June
Silk tube fitted which is thinner and more flexible than the other one.
Sunday 15 June
Tube feeding ok and he is more content, but he has a lot of secretions and also frequently being sick.
Thursday 26 June
Owen given medicine to control his secretions which are getting very bad, and also medicine to stop him being so sick.
Monday 30 June
The nurse visited and was concerned with his lungs, so we took him to Crawley Hospital.  However, the chest x-ray was clear and his heartbeat fine, but he was given antibiotics as a precaution.  Nic stayed the night with him. 
Tuesday 1 July
Nic & Owen returned home after lunch.  His secretions are still bad, the medicine he has been taking since last week has not had any affect yet.
Wednesday 2 July
During the night Owen’s breathing was very noisy and he had to be suctioned several times.  The doctor visited at 9.00 am on her routine call and arranged another visit next week.  Whilst giving Owen his feed he fell asleep.
At 10.37 am Owen passed away.  He was 19 weeks, 6 days old.