What it is like to be a CDH grandparent?

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.


How did it feel as a parent, when your daughter received a CDH diagnosis for her baby? How did you feel as the baby’s grandparent?


When Caitlin had the twelve-week scan and I knew there were problems my heart broke. I cried so many tears for her and Ryan. I would try to do deals with the universe, if I could be sick and the little baby could be cured, I would have taken that option in a heartbeat. 


I would cry for the 15-minute drive home after visiting Caitlin and Ryan at the unfairness of the situation. They are fantastic people; they didn’t deserve to carry this burden.


The biggest feeling that I felt was helplessness, there was nothing that I could do to change this situation. At no point could I say without trepidation “It is going to be ok.” Because as we knew, there was no telling what was going to happen when this precious baby was born.


My heart broke when I saw them struggling to be happy about the pregnancy, yes Twin A had this diagnosis but there was also another baby growing too. I have a very close relationship with Caitlin and for both pregnancies she has told me very soon after finding out that they were having a baby. From the minute that I am told I feel love for that little baby growing in my daughter’s tummy. So to hear that one of my grandbabies had a CDH diagnosis was terrible. I just wanted this little miracle to survive. I just wanted him to be in the surviving 50%.


How did you support your daughter through her pregnancy? Was there anything you found was useful for you to do during the pregnancy?


Once the CDH diagnosis was confirmed I got onto Google to search for an Australian CDH support group. I paid the fee to join Caitlin up and wrote about the situation. That was the best thing I could have done. What a life-changing group she has been embraced by.


To support Caitlin I ensured that I was always available for her, I listened to her when she wanted to talk. In our family my two daughters and I always share everything with each other, Ryan on the other hand was less inclined to talk about it, so I was always conscious about his wishes too.


I also encouraged Caitlin to enjoy the pregnancy – regardless of the diagnosis she was still doing an amazing thing by growing two little humans!


I learnt all that I could possibly learn about CDH, and tried to focus on the positives. Hurley didn’t have any genetic problems and he was growing to be a good size (better to be operated on). 


After Hurley was born, was there anything you felt you could do for your grandchild, or was it mainly about supporting your daughter and her husband?


I felt initially there was not a lot I could do for Hurley as he was so very unwell. I think it was mainly supporting Caitlin and Ryan.


In the first year of his life Hurley was admitted to hospital three times, so during these times I would take time off work to have Leilani and Jhye so that Caitlin and Ryan’s attention could be devoted to Hurley.


Did you find that you needed to seek help or someone to talk to during this period? How did you navigate your own grief or feelings during this time?


Throughout this time I relied very heavily on my partner and my best friend for support. They would listen to my updates of Caitlin’s neonatal visits. I always tried to look for the positives in every visit. I also believed that Hurley would survive, I didn’t allow myself to think of the alternative.


I was also fortunate enough to work with the most beautiful bunch of girls who were also fantastic for support.


The difficulty throughout the whole pregnancy that I felt, as a mum I never want my children to hurt. As a mum if my children were sad I would try to make it better. I felt so incredibly helpless throughout this whole time. I am quite a spiritual person and I did lean into this throughout this time. My dear friend had passed away two years before, so I did a lot of “talking” to him and I did believe he would look after our little man.


What advice would you give to other grandparents (or extended family) who are going through this journey with a loved one?


The advice I would give is just to support your children. There is absolutely nothing that you can do other than that. Link you children into CDH Australia, I truly believe that this was the best thing that I did for Caitlin. Every person connected to CDH Australia has been on this journey in some shape or form.


Also, ensure that you have a good support network for yourself. I do sometimes wonder if there should be a grandparent support group, because at times the feeling of being helpless and watching your child go through this challenge can be so absolutely overwhelming.


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