CDH: The rare condition that threatened the life of this mum’s unborn baby

Brittney Griffiths and Jalen

As a young, pregnant and single mum-to-be, Brittney Griffiths was already feeling quite daunted when she received news that every parent fears – her baby had a rare congenital condition with only a 30 percent chance of survival.

Here she shares her brave story.

Tracking well

Initially I was quite stressed in my pregnancy because I had a very bad breakup with my boyfriend who was the father. I moved back home with my mum though, and from that point, things became quite easy. Aside from a few migraines to start with, I had no morning sickness and it was quite a breezy pregnancy really. I was having lots of regular scans because of the shape of my uterus, but they were all tracking well and my baby was growing as he should be.

Something was wrong

My mother came with me to my 30 week scan and we soon realised that the sonographer was taking a while getting different angles and more shots, which made my mum and I look at each other thinking that this can’t be good. She went and got somebody else, which was terribly daunting, and when they came back, they said they thought it looked like hiatus hernia.

We were told we’d have to go to Melbourne or Hobart for more scans (I’m based on the east coast of Tasmania) and by now we were really worried as we had no idea what this condition was or what it meant and were also potentially facing a fair bit of travel.


Read more about babies with rare conditions:


An official diagnosis

Luckily I ended up going to Hobart for my scans, but afterwards they said it looked like my baby had Congenital Diaphragmatic Hernia (CDH). We were told that CDH was a rare condition where the organs are rearranged with the level of severity ranging from moderate to extreme, which you don’t know until the baby is born. Apparently one in 2,500 babies in Australia are born with it and generally only 50 percent of those survive. They gave my baby a 30 percent chance.

I was told by my doctors not to blame myself for it though; it’s apparently just how the diaphragm is formed and they have no idea what causes it, with research taking place all the time. I did my own research and have found some studies which point to genetics, but they don’t really know yet and sadly there is no cure.

Jalen Griffiths
Jalen a few hours after he was born

A bumpy ride

To say it was a huge shock is an understatement. It was very frightening for me also being so young – I was 19 – and a new mum and I had a lot of emotions at this time and just sort of hoped for the best.

For the rest of my pregnancy, I had to have a lot of scans and tests to check that there weren’t any other underlying conditions which might increase the risk of my baby not surviving CDH. The condition is also often associated with other health complications too. Thankfully they came back clear and at 35 weeks I was told I had to move into the Ronald McDonald house in Hobart until the birth, so I went down there and had weekly doctor visits and ultrasounds.

Brittney Griffiths
Brittney’s first cuddle with little Jalen

Jalen arrived

They were going to induce me to make sure that all the doctors were around when he was born, but after a scan the week prior, they discovered the baby was breech and had stopped growing. It was too risky they said and that I had better come in the next day for an elective c-section to get him out.

There was a team of paediatricians on board at the birth and my son let out a massive scream which I took as a good sign, because apparently CDH babies often don’t make noise. I named him Jalen and he was intubated straight away in the NICU.  Four hours after he was born, I got to see my baby boy.

Surgery required

Two days after he was born, Jalen had repair surgery done to bring his liver, bladder and bowel back down, which were all located up in his chest, which was compromising his breathing. He was on oxygen support with ventilation for five days and then had to learn how to breastfeed and breathe on his own.

Luckily he took to feeding really well, something I was relieved about because normally it’s a big issue for CDH babies, with a lot failing to thrive. My son was kicking all the goals with breathing and feeding and after 18 days I was able to bring him home. 

 

Jalen and Brittney Griffiths
Happy Jalen now at ten months old

Happy and healthy

Jalen is now ten months old and is a super happy and healthy baby. We see the doctors in Hobart every three months and recently they discovered that his bowel is rotated, which was that way from birth but they were unable to fix it during his surgery. This can cause bowel obstructions and obtrusions, however at the moment it’s not causing any problems and so they’ve decided not to do any more operations until it’s absolutely necessary. We’ve also been told that some people can live with rotated bowels their whole lives and not have any issues, but it can also be life threatening for others, so it’s just something we’ll have to keep an eye on.

There is hope

As a first-time mum, being single and young, finding out my baby had CDH was certainly terrifying and I wouldn’t have been able to cope without the support of my mum and extended family, that’s for sure. CDH is very individual though, it really depends on the baby, so you can never know for certain what you’ll be facing. Thankfully Jalen did survive though, and is a beautiful happy boy, so for any other mums out there who have been given a similar diagnosis in pregnancy, know that there is hope.

For more information about Congenital Diaphragmatic Hernia please visit cdh.org.au

 

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