World Prematurity Month 2024: Life after trauma

It has been 21 months since the premature birth of my daughter Elsie and I’m still suffering from postnatal depression (PND) and post traumatic stress disorder (PTSD). I was diagnosed with PTSD by a therapist around eight months after the birth of my daughter Elsie, but it took around a year for my doctor to diagnose me with PND and to prescribe medication.

Back to the beginning

Elsie spent 119 days in NICU before going home with feeding and breathing tubes

My daughter was born in February 2023 at 23 weeks and 4 days’ gestation, weighing only 416 grams (0.9lb). Prior to her birth I was hospitalised countless times due to heavy bleeding. Elsie spent a total of 119 days in the neonatal intensive care unit where she received the most amazing care before being discharged with an nasogastric (NG) feeding tube and home oxygen. 

While she was there, I was suffering with severe anxiety, grief and guilt so I was referred for talking therapy. This didn't help me at all. The practitioner often ended my session after 20 minutes as she believed it had come to a natural end, but honestly it was me who found it difficult to talk.

Fortunately there is an amazing charity in my local area that has its own therapist. I was referred there and first introduced to EMDR (Eye Movement Desensitisation and Reprocessing) therapy. However, because it’s a charity, I was only able to receive a limited number of sessions which just wasn't enough for my needs, especially since Elsie is a complex baby and has had multiple hospital readmissions since her NICU stay. 

Bonding issues

I was referred to the NICU psychiatry team by Elsie's community nurse who has been visiting to help support mine and Elsie's bond through play. I have always struggled to see myself as her mum. There has always been a gap between us and this is because I have had to care for her medically rather than in a maternal way. We were then referred to PETALS (Perinatal Trauma and Loss Service) for further trauma therapy. However, this has been a very long wait and while I've been at the top of the list for a while now, I'm still waiting to be seen.

Working life 

Before Elsie was born, I worked as a nurse at the same hospital where Elsie and I were both patients. I took 12 months of maternity leave and then a following six months off, so in total I was off work for 19 months. 

I recently returned to work and managed two months before my PTSD got the better of me. I suffered panic attacks if a patient or staff member came near me with a cough or cold. I would feel immense guilt if I didn't put a mask, gloves and apron on (this is something I chose to do) and my hands became so raw because I became obsessive about cleanliness. 

At work I had to walk past the Children's Ward where Elsie has had more than 20 admissions. Every time I passed the unit I felt dizzy and sick. Hello, PTSD! As a family we made the decision that I needed to leave work again. I’m grateful I’m able to do that because germs and hospitals are triggers for me.

Gratitude and guilt 

Elsie is such a happy baby and for that I am forever grateful, but the guilt about her early arrival stays with me every day because my body failed her. I still have sleepless nights and watch her monitor all night and check to make sure she's breathing. Even if she gets the slightest sniffle, I take her to the doctor’s as my brain is convinced there's something more to it. 

Elsie aged 20 months (16 months corrected) 

Unfortunately I do still need further trauma therapy to make sure I heal, I still have flashbacks from the NICU that I haven't addressed on top of new trauma from the multiple admissions Elsie has had. I would tell other NICU parents to take each day as it comes and seek help if you need it. There is no shame in it!

Thanks to Miriam for sharing Elsie’s story.