Kian’s Story - Congenital Diaphragmatic Hernia (CDH)

Kian was born November 7th, 2019, in Växjö, Sweden, with undiagnosed LCDH. I started to have complications due to early contractions in week 26, and even after 14 ultrasounds, nobody noticed his CDH. I think Kian didn't want us to be scared, so he simply decided to hide his diaphragm from all the doctors throughout my whole pregnancy. He gave us a big surprise when he arrived.

At birth, it took a while before he cried, and I remember asking the midwife why he wasn't crying. I was so worried! She just said, give him a couple of seconds, and then I heard him cry. It wasn't loud, but he cried. They put him on my chest, and it was a wonderful moment. So perfect!

He started breastfeeding immediately, and everything was going well. An hour after birth, I noticed that he was breathing a bit faster but I didn't think much about it. The doctor had done all the standard checkups, and everything looked great. I kept asking Kian's father if he also felt like Kian's breathing was too fast. I also remember it was hard to keep him warm, and his lips were getting bluish. Nevertheless, when the doctors said that everything was fine, it became more difficult for me to follow my gut feeling.

When Kian was 8 hours old, the doctor came in for another check up. This was the moment when my whole world turned upside down. His oxygen levels were low, and at first, they thought he had an infection. We could see something wasn't right from the doctor's facial expression when the doctor listened to his heart. He tried to hide it, but a mother knows! He ordered an X-ray, and soon after that, we were told he had CDH. His entire intestinal tract was in his chest. His spleen and appendix were on opposite sides, and his heart was pushed onto his right side. We had never heard of CDH before. The medical team told us that his case was a severe life-threatening condition and that we had to be transferred to another hospital in Lund. Everyone was so shocked that his CDH wasn't diagnosed during my pregnancy.

After that, everything happened so fast. Kian's father and I were surprised. They took him away from us and intubated him immediately. He was stable the whole time. It was so hard to accept that after giving birth to (what we thought was) a healthy boy, and suddenly, he was fighting for his life and hooked up to all different machines.

He had his repair surgery when he was three days old, and he did amazing! The surgeons, doctors, and nurses in Lund are THE BEST. They took such good care of our little boy and saved his life. The first couple of days after his surgery, he had minor ups and downs. He also had pulmonary hypertension but recovered fast. He was intubated for three days after surgery and then was put on wall oxygen. Kian made so much progress every day for a week that we were transferred back to our home hospital, where we spent three more weeks. During these three weeks, he was weaned off oxygen, started breastfeeding fully, and didn't need his feeding tube anymore. He kept on surprising us all, ever since the day he was born. He is such a happy baby. He smiles all the time, and he always has this charming look in his eyes.

He turned one year, six days ago and is living his best life! He loves to run around and play hide and seek. He loves playing with cars with his big brother. And he seriously never cries, but is always happy. He is my Tiny Hero and my proof that everything is possible no matter the outcome.

I hope his story will help! I wish I had read stories like these when our whole world was just empty and full of tragedy. All I found about CDH were devastating losses, horrible survival rates, complications, and tragedies.

These little warriors are the strongest, and they can overcome so much! Never ever lose hope, and always keep the faith!