"Maternity/NICU/Paediatric care"

About: Stoke Mandeville Hospital / Maternity

(as the patient),

I was taken in to hospital & had my waters broken as they were concerned my placenta was failing. Delivery staff were superb & he arrived quickly, but was soon taken in to NICU with breathing problems. We were cared for at Stoke Mandeville & a brief stay at Oxford John Radcliffe, before being discharged to first postnatal ward & then the paediatric ward for extended jaundice checks. My story isn't really about the care I received but the system of having a baby who then becomes very poorly & needs a lot of care.

 No one was checking how I was physically & mentally dealing with the trauma we were going through. I had community midwives calling me to go to outpatient appointments in a totally different area for my 2 & 5 day appointments, who had no idea I was in NICU with a very poorly baby. I wasn't offered any food while staying in NICU, until the third day we were there - no one had asked if I had eaten & my blood pressure was so low with lack of sleep & food that I could barely see. I wasn't allowed to feed or hold my baby, so mentally I was in a total state, & no one offered anyone to talk to or checked that I wasn't sinking into postnatal depression. I was barely able to see my other children, which was an added stress. When we were eventually allowed home & I saw my fantastic community midwife & health visitor, I was very aware of how traumatised I was able to share that with them. But for a lot of women or first time Mum's, expressing that you were struggling to cope with everything that had happened could be very scary - people do feel that the HV's are checking up on you, sadly.

I was discharged to the paediatric ward for extended jaundice checks, where I feel that the doctor scared me into allowing yet more blood tests on my tiny baby who had already been through so much, & then asked me to re-live the NICU experience that had left me feeling so vulnerable, despite it having taken place down the corridor. They also told me I could assume we were in the clear if they didn't call that night, & then rang me 3 days later, after we had celebrated the nightmare being over - to say there was an issue with the results & we would have to go back in. Because of this, I requested a call back after the second set of results whether they were clear or not, which I received the next day to say they wanted to re-do them one more time. I then got another call from a different doctor at the ward at 11pm the next day, trying to speak to me about the same results because they didn't realise we had been called already. I have a baby & 2 other children - why on earth would they call about non urgent results so late at night, and why didn't they know someone had called me more than 24hrs earlier?

 In summary, while I am so grateful for the care my son & I received at Stoke Mandeville, I feel that the system was/is appalling and maternity/postnatal care completely walked away when my son was taken to NICU, despite me needing physical care & support to cope with the situation. Community midwifery had no idea where I was, & that I needed different care to a normal, postnatal mother. NICU rightly focused on my son, but were unable to get me any support to cope with the ordeal - I had to take myself off round the hospital to try & find someone to do my postnatal checks. The experience of paediatric care has left me distressed & anxious about my child, & unable to enjoy him without worrying that something is wrong. I feel I was aggressively pushed into blood tests by warnings of all the life threatening things that could be wrong my him, with seemingly no concern for why I might be distressed about the tests, or knowledge or information from different wards in the same hospital about what had already happened. Overall, while 90% of the individuals involved in our care where brilliant, committed & caring people, the system hasn't allowed for much care of me physically, or for any support in dealing with the experience. I am left a very anxious mother, unable to enjoy my newborn because I'm worried something is wrong with him, & so scared of hospitals that I was too scared to call the out of hours doctor to get advice when he developed a nasty cough.

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Response from Buckinghamshire Healthcare NHS Trust

Dear Lefen

I was sorry to read of your experience of the Maternity,NICU and Paediatric Care at Stoke Mandeville following the birth of your son. I have responded to your second post regarding the administrative issue, requesting for you to contact our dedicated PALS service, and feel this would be an opportunity to hear of your whole experience and discuss options available to you where PALS can offer assistance in taking your concerns forward.

I hope you take the opportunity to contact PALS who are available on 01296 316042 or PALS@buckshealthcare.nhs.uk