What it is like to be a CDH grandparent?
By Lisa Ferguson, mother to Caitlin Ferguson, and grandmother to CDH survivor Hurley.
Can you share some background to your grandson, Hurley’s CDH journey?
My daughter, Caitlin, found out she was pregnant with twins at her six-week ultrasound. The happiness I felt was euphoric. I was already grandmother to Caitlin and her husband Ryan’s eldest daughter, Leilani, and now two more precious babies were going to join our very close family.
When Caitlin and Ryan went for their 12-week scan much of the sonographer’s attention was focused on Twin A. They were not given much information, but were given a letter to take to their GP that had a lot of medical terminology. We all knew that there was something not right with Twin A, but the medical staff didn’t tell Caitlin and Ryan what it was. I remember not sleeping that night and in the early hours of the morning I Googled the words that were on the doctor’s letter. This was the first time that I had ever heard of the condition Congenital Diaphragmatic Hernia. I then read the statistics and the survival rates for babies diagnosed with CDH. My heart broke for my daughter, son-in-law and little Twin A, in that moment. I then emailed the letter to my sister, who is a midwife and asked her to have a look. She in turn gave the letter to a doctor who she worked with and he confirmed it looked like CDH.
Meanwhile, my daughter and son-in-law went to see the GP who didn’t mention CDH but instead contacted the Mercy Hospital to arrange an appointment, but the appointment was not for several weeks. So my sister came to speak to Caitlin and Ryan with the information that she had about CDH.
In the end, Twin A – Hurley, was diagnosed with left-sided CDH and Twin B –Jhye was healthy and fine. Throughout the pregnancy things looked very positive and it appeared that Hurley only had a small section of bowel up in his chest cavity. In the words of their doctor “For a shitty situation, it looks quite good.”
When the twins were born myself, my sister and Ryan’s mother sat out in the waiting room. After being born, Hurley was taken to be stabilised but it took many hours for Hurley to be stable enough to move across to the Royal Children’s Hospital in Melbourne. We were originally told that he would be moved at 2pm, but it was well after 9pm until he was stable enough to move. He was extremely sick little baby and no one knew if he would survive.
At 5pm a doctor came to the birthing suite with a photo of Hurley. I will never forget her opening words “Things aren’t great” but she listed the positives of all the medical interventions they hadn’t had to do yet. I looked at Caitlin and Ryan and they were looking so overwhelmed. They were feeling joy that they were holding Jhye, but the uncertainty of what was happening to Hurley.
I looked at the photo of Hurley and could no longer contain my emotions, the fear I felt for this little baby was incomprehensible. Going through my head was ‘What if he didn’t make it?’ This was the only time that I allowed myself to think that. I could never imagine my daughter having to experience that pain. I excused myself from the room because I did not want Caitlin and Ryan to see the fear on my face.
Finally at 9pm Caitlin and Ryan were briefly able see Hurley before he was transported to the Royal Children’s Hospital. As I left the hospital, I called my partner and my beautiful best friend sobbing during the drive home. I didn’t think our baby was going to make it. Before the birth I really believed Hurley was going to be ok. I told my partner very confidently before the day that they were born “We will be bringing two babies home” But during that drive home that night I didn’t believe that would be happening.
But Hurley recovered well during his seven-week admission in the hospital and Caitlin, Ryan, Leilani and Jhye stayed in Melbourne for that duration.
In the first year of his life Hurley was admitted to hospital three times. Hurley is now 3 – he is a funny, beautiful little boy who enjoys playing with his twin brother and big sister.