Congenital Diaphragmatic Hernia: when your family becomes the one in 3000

There are three things I didn’t expect to hear during my pregnancy. The first one was at the 12-week scan: “You are expecting twins!” The second and third ones were at the 20-week scan: “You are expecting identical twin girls! But twin two is suffering from a condition called Congenital Diaphragmatic Hernia (CDH)”.

Never heard of CDH? Neither did we until the 10th April 2017.

It is a hole in the diaphragm that allows the organs such as the liver, stomach and intestines to move up into the chest cavity and prevent the lungs from developing.  CDH affects one in 3000 babies in the world, one in 2500 babies in the UK, and our case was one of two recorded cases in the South West and the only one recorded (we were told) to affect an identical twin. The causes are still unknown and the chance of survival at birth is 50%.

The words, just like our hearts, were heavy and they resonated in our heads for months. Every day, every project, the laughs, the smiles, the hopes became tinted with fear.

Infographic explaining CDH. For a text-only detailed explanation of CDH visit
For a text-only detailed explanation of CDH visit the CDH UK website.

I gave birth on the 7th August to perfectly gorgeous girls, Lola and Chloé, but the fear became reality on the morning of the 8th August 2017. After fighting for 18 hours, Chloé’s heart, after filling ours with love and joy, grew tired and stopped.

Almost four years on, Lola is happy and healthy making sure she fills our lives with smiles, tantrums and love for the both of them. We, as a family, are adapting to our new normal, aiming to raise as much awareness of CDH as we can.

Maybe one day we will get the answers as to why and how, but for now, if our contribution can help one of those families out of 3000 touched by the same words that we were, then a massive mission has been accomplished.

If you want to learn more about CDH please visit the CDH UK website, and if my family’s story resonates and you would like to talk then CDH UK offer lots of different support.

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