Nils – Our Little Fighter

One year ago, we received the wonderful news that we were going to become parents again.

The pregnancy with Nils went as expected – mom felt nauseous, just like when big sister Livia was in the womb, and Nils was a calm baby with frequent hiccups. Everything looked good.

At 39 weeks and 1 day, mom’s water broke spontaneously at home. We packed the hospital bag, full of anticipation – soon we would meet our little boy. The birth was beautiful, safe, and calm. Mom was in control, and all vital signs were stable.

When Nils was born, he looked around with big, curious eyes. But after just one minute, everything changed. Nils's heart rate dropped dangerously low, and he wasn’t breathing. The alarm went off. The room quickly filled with doctors. He was intubated and CPR was initiated.

For 29 long minutes, the medical team fought to bring his heartbeat back. At just 45 minutes old, he lay cooled in the intensive care unit, in an effort to protect his brain from the damage caused by lack of oxygen.

For 72 hours, we swung between hope and despair. We held an emergency baptism, not knowing if he would survive the rewarming process. But Nils quickly showed us what a fighter he is. He made it through the rewarming. He was extubated – then intubated again – and eventually extubated once more. His tiny body refused to give up.

After four weeks in the hospital, we were finally able to come home to big sister. Everyday life looks different now. Nils lacks a swallowing reflex and receives his nutrition through a feeding tube. We help him suction mucus. His lungs are extra sensitive, and infections pose a serious threat.

Nils means “victory of the people” – and he truly lives up to his name. Despite severe brain injury, epileptic seizures, and all the challenges that come with severe HIE, he defies the odds every single day. He is our hero.

Nils has been diagnosed with severe asphyxia that led to HIE – Hypoxic-Ischemic Encephalopathy – a brain injury that occurs when the brain doesn't receive enough oxygen and blood. HIE is the fifth most common cause of death among children globally and affects 2–3 out of every 1,000 newborns.

There is no cure. The only available treatment is therapeutic hypothermia for 72 hours – and even that is not always enough.

We don’t know what the future holds for our beloved Nils – but we do know that he will always be deeply loved. He is an essential part of our family, our little warrior, our greatest pride.