"It broke my heart, but I knew he was a fighter" - Jenna's story


On 4th July 2016 I went to my 20 week scan with my sister, excited to see my baby and find out the gender. I was also extremely nervous, as I had never taken my pregnancy for granted and knew that the 20 week scan was to check for any abnormalities. All was going well and the sonographer had told me that I was expecting a baby boy, I said to my sister "I told you!" After what seemed like a lifetime the sonographer said that everything looks great, except the baby's heart looks like it is slightly shifted to the right. My heart sunk and she said I will need to get a consultant to do a scan and check. Check for what?

My sister and I then waited for ages in a tiny room with no windows, just two chairs and a table with a box of tissues on. By this point I was already crying inconsolably. The consultant eventually came in and said she was ready to scan me again. I was absolutely terrified, but then, I heard her say the dreaded words “congenital diaphragmatic hernia” (CDH). I had no idea what this was or how serious it was until she started to explain it to us. My world had completely crashed, I was broken hearted and terrified. I hardly took any of what she was saying in, luckily my sister was there and heard it all too. I had an amniocentesis done to check for any genetic or chromosome disorders too, and then I was asked to go home and wait for the hospital to contact for me to have another scan in fetal medicine.


Two days later I had an appointment where they confirmed it was definitely left sided CDH and his stomach, bowel and intestines had all moved up into his chest cavity. I also had a scan with a cardiologist to check his heart, which looked perfectly healthy, and also met with the paediatricians, a surgeon and a NICU doctor to discuss potentially what might happen. They then gave me some options and said they would be in touch in a week once I had made my decision. I felt numb, sad and absolutely petrified, but I did not want to terminate my baby when they told me that he "could be ok". They gave him a 50% chance.

During the next four months, I was living my worst nightmare. I had appointments and scans every six to eight weeks to check everything was ok and then eventually I was booked in to be induced at 39+4 weeks to have my baby.

That day eventually arrived and I was terrified of what I was about to face. My mum was by my side the whole time, I was put on a drip at 6:30pm and at 6:33am the following day, I gave birth to the most beautiful baby boy, who I named Freddie James (after my dad).


He was taken straight away to a resuscitator and put on a ventilator. Sadly I didn't get to see him at all until later that day, as I had to be rushed off to theatre as I had a large postpartum haemorrhage, or PPH (excessive bleeding following delivery). When I finally did get to see him, he was extremely poorly. He had so many tubes and wires attached to him and so many big machines, it broke my heart, but I knew he was a fighter.

I sat by his bedside talking, singing and reading him stories, as I knew he would recognise my voice. The first 48 hours were very critical, as the doctors struggled to keep him stable. By day four he was "stable" and by day six he had his surgery to repair his diaphragm and move his other organs back to where they belong. He needed a patch, as the hole was large, and he barely had any diaphragm on his left side.

The next few weeks what I can only describe as an emotional rollercoaster, constant highs and lows, one step forward and then two steps back. Freddie had quite a few setbacks along the way. He had a punctured lung, a chest drain, it took three attempts to get him off the ventilator and onto CPAP, reflux, high blood pressure, and these are just a few.


At 17 days old I finally got to hold him and have my first cuddle, which was amazing. At three weeks old he moved from ICU (intensive care) to HDU (high dependency care), he then moved from a CPAP machine to high flow and was mostly breathing air with some pressure to help him. At five weeks he was transferred to my local hospital, and then spent a further three weeks there in Basingstoke NICU, where he learnt to fully oral feed via breast and bottle. Eventually he was able to breathe air all by himself. At exactly eight weeks old I finally got to take him home - the best day ever.

I did have a few feeding issues with him and he has pectus excavatum, but other than that, he has constantly thrived. He is now a very happy, lively and healthy four year old boy. I will be forever grateful for the amazing NHS staff at Princess Anne NICU and Basingstoke NICU who saved my baby boy's life and I thank my lucky stars every day to have him here with me. If I have one piece of advice for an expectant parent it would be to talk, sing and just generally speak to your baby whilst they are inside, and then also once they are born and fighting.