What is it like to be an adult CDH survivor and have a baby of your own
By Erin, CDH survivor and new mum.
Erin’s left-hand-side CDH was diagnosed at her mother’s 20-week ultrasound scan in 1993. She was born in 1993 in Melbourne and has since had 5 surgeries to repair the hole in her diaphragm. In 2022, Erin welcomed a baby of her own. Erin shares her CDH journey in this Q&A.
Tell us about your CDH journey
During my mum’s pregnancy in 1993, my parents were told at their 20-week scan that their baby (me) had CDH. The team at the Monash Medical Centre gave me a 50% chance of survival.
After lots of tests, my parents were told the only thing wrong with me was the hole in my diaphragm, so my family waited for my arrival with their fingers crossed.
When I was born, I gave a cry, but I was quite blue. Dad’s journal entry describes the doctors sticking a tube down my throat to ventilate me. My colour changed to a healthy pink, which they took to be a good sign. Mum was waiting for the doctors to tell her that everything would be fine, but there was still a long way to go.
The day after I was born, I had my first surgery to repair the hole in my diaphragm. Afterwards, the doctors let my parents know there was a complication. The hernia was larger than expected and they had to insert mesh webbing called a patch to close it properly.
A few days later my parents were told my left lung had a hole in it, which the surgeons hoped would heal by itself. I gradually improved but the journey was full of ups and downs.
After 11 days in the NICU, my mum was able to nurse me for the first time. On day 23 my parents took me home, which was much earlier than expected.
Do you remember what it was like growing up as a child with CDH? Did you have any related medical issues?
Although many cases of CDH require only one surgery, over the years I have needed several additional surgeries to repair the hole in my diaphragm. I had three surgeries when I was a baby, another one when I was 8 years old, and another when I was 16.
Has CDH impacted you in adulthood?
Not long after I turned 18 I found out the surgery I’d had 18 months prior had been unsuccessful. The new patch that they used had pulled away and I had a 5×6cm hole that had my large intestine had looped through. At this time I was also told that carrying my own baby was most likely something I wouldn’t be able to do.
I spent a few years trying to find a surgeon to “fix” me but was told unless it caused a life-threatening issue, no one was game to attempt a sixth repair.
I had pain around one of my scars and had cosmetic surgery to remove adhesions, which helped significantly with my pain.
I have reflux, which I am on medication for, but other than that it currently doesn’t cause any significant issues.
What is it like being a first-time mum?
Two years ago I had a pre-pregnancy assessment with a specialist obstetrician, who told me that I absolutely could try to carry a baby but I would need to be closely monitored throughout.
I was under obstetrician care at Box Hill Hospital from 15 weeks of pregnancy. I was very fortunate that my CDH didn’t cause any additional pain, discomfort or complications during pregnancy.
I had a planned caesarean booked for the 12th of December but due to other pregnancy complications (gestational diabetes and cholestasis) my booking was brought forward to the 2nd of December 2022. My partner, Dean, and I welcomed our daughter, Arwyn (Wynnie) Clare, weighing 2.76kgs.
There was a time that I had decided I didn’t want children. I think that was because of the uncertainty surrounding how my body would cope, but a few years ago a switch flicked and I knew I was ready and that I’d do anything to have my own baby.
Wynnie has been everything I dreamt of and more. I never knew you could love someone so fiercely.
What advice would you give to a parent who has just found out their baby has CDH?
It’s hard for me to give advice as a survivor, I have only gone through the other side of it… but as a new parent? You need to look after yourself, talk to your partner about your fears and ask as many questions of your specialists as you want. Do whatever feels right to you; trust your instincts.