It's a celebration of Dexter's parents' strength, courage and love.
Soldiers experience PTSD. Children from war-torn nations experience it. Survivors of car crashes, too. Children who experienced repeated sexual abuse suffer from it.
Something to consider: Around 1 million Australians experience PTSD in any one year, and 12 per cent of Australians will experience PTSD in their lifetime. (Beyond Blue) And, Australia isn’t a war-torn nation!
So, why would I be writing about Post-Traumatic Stress Disorder on Dexter’s blog?
Parents of premature babies suffer from Post-Traumatic Stress Disorder.
There is an increasing amount of research and funding going into studying the emotions and well-being of parents who spend time in the neo-natal intensive care unit (NICU) with their pre-term baby. It’s said that having a baby in the NICU may be one of the most traumatic things you will ever experience.
(Unless your child goes on to develop cancer!)
You get bad news and then you get more bad news. Every day is the same. There is no escape. Car accident survivors suffer the ordeal once – and remember it often. NICU parents suffer ordeal after ordeal after ordeal after ordeal… and they can’t escape the sights and sounds.
Trying to sleep at night, you hear the screams of the monitors and dream about your baby, struggling to make it through another day. You imagine the shrill ringing of the phone in the midnight hours, with nurses telling you to hurry back to hospital to say goodbye.
You don’t eat. You don’t sleep. You don’t live. You just go through the motions.
You can’t be sad. You can’t be depressed (even when you cry every day and then sob in painful silence). You have to be strong and support family and friends as you update them on changes and progress… and yet, you’re not strong enough for yourself. You’re not sick. Your baby is sick. You need to be strong. Parents are not taken aside and spoken to about Post-Traumatic Stress Disorder… though more and more hospitals are starting to do this, and support strategies are starting to be implemented. (Including buddying new parents with parents who have already been through the NICU ordeal and providing access to social workers.)
It’s not uncommon for NICU mothers to suffer from depression for at least
27 months after the birth of their premature baby. Research also shows that anniversaries and certain dates trigger emotions and re-new memories. Six months after a baby’s expected due date triggers stress reactions in many NICU mothers.
Fathers suffer from PTSD is a slightly different way. Research suggests they remain ‘strong’ during the NICU period, while the mother suffers from anxiety, stress and depression. Typically, 4 months after the child’s birth, fathers suffer from PTSD, at a time when mothers are less stressed and depressed, and can be the strong one for him. Research shows that 33% of fathers will suffer from PTSD at this stage. (Up to 53% of mothers will suffer from PTSD.)
So, what does Post-Traumatic Stress Disorder look like for NICU parents?
Nightmares... Flashbacks... Panic... Depression... Anxiety... Insomnia… Numbness… Anger… Aggression…
Anything can trigger these emotions… They can be triggered anywhere, any time.
In the NICU, some parents may not be able to look at, or hold, their child because of their PTSD. The child-parent bond can be forever changed and impaired. Parents may even stay away from the NICU.
Often, mothers panic every time their child coughs or sneezes, with PTSD emotions heightening with each possible sickness. (Add liver cancer to Dexter’s story, and his parent’s strong unity and continued love for each other and their little family, reflects their incredible love and support for each other.)
Dexter’s experience was punctuated by several near-death moments. His parents held each other as they watched Dexter being resuscitated. They’ve listen to each other’s anguish over the phone, and had to endure countless enforced months of sleeping apart, unable to even hold each other through the long nights. And, no one told them about Post Traumatic Stress Disorder.
It’s not uncommon for NICU mothers to sleep with their clothes and shoes on, anticipating a rushed trip to the hospital in the middle of the night.
Shopping centre scanners can trigger memories of the alarming monitors…
After 122 days, Dexter came home… with a grasby monitor to check his breathing. They left the NICU, but not the alarming. The monitor alarmed… a lot… especially at night. And so, the trauma continued.
Even now, two years later (and liver cancer, six rounds of chemotherapy, a few surgeries and many more hospital experiences to further impound on the trauma), different things trigger PTSD for Dexter’s family.
(Dexter himself has suffered from nightmares from an early age, and these are most common immediately after a hospital stay. He sleeps most comfortably between his parents, in the safety of their love.)
How does Post Traumatic Stress Disorder impact on their lives now?
· Constantly monitoring Dexter’s health and making judgments on whether hospitalisation might be needed…
· Slight temperatures and lethargy trigger thoughts of leukaemia…
· Television shows… movies… advertisements, telling of stories like Dexter’s can bring back the sights and sounds and emotions of the NICU…
· The month of May… and June.
· A radio station! Dexter’s nurses always played one radio station so, in Sydney, Lenice always plays that station. Every time she left Dexter in the NICU, she tuned into the same station – to feel as though they were still together.
For many NICU parents, even years later, they feel as though they are ‘just hanging on’.
*Just to be clear, Dexter’s parents are ‘well’. I didn’t write this after watching them crumble and fall apart. They are incredibly strong and have been an amazing strength for each other, even after being knocked over again and again. It’s inspiring to watch them support each other and it quickly becomes clear that this is where Dexter gets his strength and determination. The love they have for him is beautiful.
I wrote this because I wondered… I wanted to know the rates of depression and separation/divorce in NICU parents, because surely, if something will break a relationship, it’s the stress of premature birth, severe to moderate cerebral palsy, a vision impairment and liver cancer… all dealt with within two years.
I learned the divorce rate for NICU parents is 80 – 97%.
And that’s only the NICU side of things. Add cerebral palsy heartbreak. Add pressures of therapies and treatments.
Add smashed dreams and broken hearts. Add vision impairments. Add months of separation brought about through hospitalisation. Add liver cancer.
I want to publicly praise Dexter’s parents for their commitment, their strength and their love.
You’re both incredible. xx