My Trauma Story Related To NICU

I have a story to tell you. Know that I’m ok because I have worked damn hard to make it ok. And no matter what, you are stronger than you know.

There are many things I would do differently. The most important things are:

• that I would remove all my expectations and ask my GP to be very frank with me about what the birth scenarios could be; and
• I would work out who is going to be my strongest advocate and take them with me. I would give them permission to speak their mind or work out a game plan for each interaction with the health system. I would not assume my partner is capable of this.
• I would focus on looking after me and my baby – to hell with everyone else’s needs. I only now realise how precious and necessary that time was.

Some background:

You should know that during my pregnancy I had withdrawn off all medications for my anxiety/depression. You should know that I was very well monitored with this by my GP. I was also very clear about this with the obstetricians and kept them informed of my mental health needs all the way through. This was (mostly) well documented in my patient notes.

Late in my pregnancy the lead obstetrician at the hospital physically stood over me, peered down over his glasses and said “your baby will die!” as a tactic to bully me into a test. The lead nurse that witnessed this was clearly just as uncomfortable as I was and did not do anything. I was already traumatised at this point.

Because I cried – like, a few tears – he put a red dot on my file and made a referral to their social worker without my permission. That red dot made me so angry. That referral was inappropriate as I was very clear about the excellent supports I had in place. I let the social worker know this.

• I wish I had stood up and walked out. I would have needed to dig deep into my courage but it would have been a lot better than sitting there feeling broken. But really, I was very vulnerable and would probably not be able to if in the same situation.
• I would take someone confident and strong enough to confront someone like that. My angry much more experienced mum, doula, mouthy best-friend, tough partner, or psychologist would all do the job.
• I wished I had put in a formal complaint at that point.

SCBU

Until my own experience I only knew of stories of beautiful home births, straight-forward vaginal births, and planned caesareans.

My son is now 6 and we each still experience issues related specifically to the trauma of being separated.

He was in SCBU (Special Care Birthing Unit) after being resuscitated at birth after an emergency caesarean. At the time I felt numb to it all – I was a deer in the headlights following along with a world I did not know and was not prepared for.

In the birthing class there was only a brief mention of  “if you need an emergency caesarean” and “sometimes a baby is taken to special care” but this was focused on describing the medical process and of course I felt confident this wouldn’t happen to me. There was no mention of how women feel about this, how it can affect you and your baby, and how to deal with this. No mention of PTSD, PPD or birth trauma.

• If I’d known how likely this was and had heard of similar stories I would have talked more with my GP and psychologist about what I would need and do.

At times I cried, I howled. The staff avoided me as they didn’t know how to handle crying, at least that’s the way I interpreted it. I focused on getting mobile enough so I could independently go to SCBU to be with my baby. Little did I know I would be punished for getting better.

On the third day a team consisting of the unit manager, multiple obstetricians, and other maternity ward nurses entered my room. My partner and I were getting ready to go to our son to breastfeed him. That was my focus.

The unit manager discharged me, just like that. I was confused. I looked to the obstetricians and their faces also looked confused. They said nothing. I asked about my son and the unit manager said he couldn’t go home with me. I made a noise I have only ever heard myself do once before, I was inconsolable. The unit manager asked me what was wrong!!! I was imploding – I couldn’t speak. She asked my partner. No one said or did anything. Eventually the manager asked if I wanted to see the social worker… you know, that one who I was referred to earlier…

The social worker proceeded to tell me this was “normal”, standard procedure, and women before me have done it so I will too. Then she said I should go to my GP straight away and get back on my medication. There it was. Me being separated from my baby and feeling this way was my fault – get back on meds and deal with it. But it wasn’t normal, and it wasn’t my fault. It was this sick circumstance of poor communication and lack of advocacy. No amount of medication was going to change that I was being separated from my baby.

• Knowing what I know now, I would tell the social worker and the unit manager that what I need is someone to advocate for me and my family. I would tell them that if they couldn’t do that then get out of my room and find someone who can.

One of the obstetricians saw me a day or so later and apologised, letting me know she had no idea maternity ward were going to do that. She said that was not their intention at all with that meeting and she knew I needed to stay. I smiled, I nodded and went to my baby.

• If I could go back, I would not be polite. I would be clear that she also failed to provide me with the care she was obligated to provide. She knew and did nothing. I would ask her to go and tell that to the ward manager. I would make a formal complaint.
• I would also make sure I had someone with me who would be a strong advocate. My partner had no idea, I had no idea, we weren’t allowed people in SCBU with us.
• I would have called my psych and asked for help to have my voice heard. I know he would have done that for me.

The maternity ward and SCBU did not communicate. There was not a shared-care approach or a family-centred approach to the care at all. The entire experience was isolating.

I was trying to establish breastfeeding but SCBU kept “topping him up” with formula…which he always vomited; he was losing weight. The paediatricians would pay no attention to me…when and if I ever saw them. The nurses who were compassionate were afraid of senior nurses and of the paediatricians. The SCBU nurses said I could be there as much as I wanted, but when I was going to stay through the night, they made that difficult. They kept using my mental health as a reason for me to not be there. Eventually I got angry and required they arrange for me to see the paediatrician and make it possible for me to be there all the time. That changed everything very quickly!

• Be angry, be firm, demand what you need because mums have an amazing strong sixth sense that science will never understand.

My baby thrived after this point.

When my baby was 3 he recalled his birth and how he felt in VIVID detail while he was crying. He knew details that he otherwise would not have known. He described the sharp pain inside his head – the monitoring device pierced into the top of his head. He could describe watching me walk away from him while he cried out to me. He said he couldn’t see properly because of the “bright sun” – the fluorescent lights in SCBU. He described being inside a bath looking out of clear walls, by himself. This was the nursery crib. He described the one woman’s voice he didn’t like because “she was angry”. There were lots of those voices, but I suspect this was the obstetrician who shoved her hand so high into me I felt like I was going to die. I think he felt what I felt towards her.

I had no way of dealing with the trauma. There was no discussion of how all this was impacting me. They were only interested in my physical health and my baby’s growth.

To this day we struggle with separation anxiety, ASD, generalised anxiety, gut health issues, and eating difficulties. He has never recovered from the physical and psychological trauma. I have never recovered from the psychological trauma.

Admitting that I was, am, traumatised is still something I find very hard to do. I really needed a specialist maternal mental health service where these experiences would have been part of the discussion. I probably still need this in some way.

I find writing about it very helpful. Over the years I have written a few letters of complaint and have been very afraid to send them. But putting it in writing brings a level of validity and acceptance I may not otherwise have.