Supporting Mums of Poorly and Later Gestation Babies

When Joseph was going through hospital, we were fairly unique within our Special Care Baby Unit. Joseph was the only sub 30 weeker for the most part, and by far the smallest baby. The first mum I befriended had an 8lb baby with complex internal problems. I quickly learnt that in medical terms, sometimes gestation means nothing. Any baby can be in trouble for all sorts of reasons. I saw just as many term babies come through the door as I did premature babies.

One of my favourite moments was when Joseph was in HDU there were three other babies. An extremely important specialist was brought in, his entourage were temporarily delayed at the desk, so he came into the room to determine which baby he had been brought in to see, I watched his eyes scan the room and he came directly to our incubator. Suddenly three junior doctors whooshed up to his side and said "oi, you leave our Joseph alone, he's fine, its this one you have come to see", he looked at this enormous baby and said "oh, well I wouldn't have picked that one". Whilst it was sort of funny, it worried me that even doctors can be guilty of assuming that the littlest is the poorliest.

I have noticed, particularly lately, some conversations that have disturbed me. Mums who have had very small babies in hospital for a long time criticising those who feel traumatised, though their babies were in just a short time. And this worries me. Surely as mothers who have been through difficult times we should be empathetic and understanding?

Length of stay is not always an indication of how poorly a baby is. In my previous job, a large part of my role was managing length of stay (usually of adults) but I learnt that things can delay discharge which whilst are medical in nature, are not severe. So for example Joseph's length of stay was 76 nights, he was critically ill for the first 25 of these. The rest of these days were Joseph learning to breathe, suck, maintain his temperature, all of which are important, but didn't make him poorly, just underdeveloped. Whilst not ready for discharge, he wasn't a "sick" baby.

But contrast this to a baby born at term, who perhaps was in foetal distress, delivered by ventouse, crashed at birth and needed to be resuscitated and then have 5 days in special care to receive treatment. Is that any less a traumatic experience for the mother, just because the stay happened to be 71 nights shorter than ours? Babies who need surgery often are in a much more critical condition than Joseph was, yet their stay is shorter. I think we need to completely get away from this concept of the longer a baby is in the poorlier they are.

Clearly there are babies who are in hospital a very long time, who are indeed, very poorly, and I wouldn't wish to minimise the trauma and stress these mothers go through either.

Often mums who have had a traumatic experience are worried about talking to me. "I feel bad even discussing it because your situation was so much worse." I never feel that way, in fact I felt and still feel very blessed. When I got to hospital that day, and was diagnosed and told Joseph would be born the following day, I knew exactly the path we would tread, before a doctor even came and spoke to me. I knew Joseph would be in at the very least until around his due date and anything else was a bonus. I knew he would be in ITU for about a month, then HDU for a month, then Special Care Nursery to finish him off before he would be ready.

Joseph had his "blip" around day 5, and was critical for a time, and whilst NEC is evil, it's very common and it is not unusual for babies like Joseph to either have NEC or conditions similar. For the rest of his stay his "complications" were very ordinary ones for which there was a clear treatment plan. 

Contrast this to a mother who has reached term, goes into labour and then it all goes pear shaped. You expect to deliver a healthy baby, and get home within a few days. If it all goes wrong, its very distressing for all concerned, and that family are launched into the unknown.

I hate competitive parenting at the best of times, but I think sometimes those of us who have had premature babies can be just as bad as the term mummies comparing how brilliant their babies are!

I strongly believe that many term mums or mums of premature babies of later gestation, fail to get help and support because their experience isn't recognised, or its minimised. I do feel that as mothers, not just as mothers of very early premature babies, we have a responsibility, as much as we are able, to empathise and support all mums, equally, without judgement.

To me, the absolutely most traumatic part of our whole journey was being separated from my baby, not being able to be with him at birth, coupled with the fear that perhaps I may not be bringing a baby home. And surely, that unites all of us whether your baby is in the unit 7 hours, 7 days, 7 weeks or 76 days.