"Maternity/NICU/Paediatric care"

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.