Sleep = Death. I’m begging for help to save my son!

Every time I approach my son’s cot, I’m afraid that I’ll find him dead. Patrick suffers from a super-rare disease, central hypoventilation syndrome, which causes him to stop breathing during sleep. The only thing that saves him then is the respirator. If the machine breaks, turns off, I don’t hear the alarm or the tube gets blocked - my son chokes to death… I alone take care of him and am on the edge of endurance. The only way to save my son is an implantation of a respiratory pacemaker. As long as he survives till then…

Throughout the whole pregnancy, I felt… as if I wasn’t really pregnant. My baby wasn’t moving like he should, I never knew what it was like to have cramps. My doctor for many months told me that it was normal. Only a few weeks before giving birth did a different gynaecologist diagnose the hypotrophy. My son was too small. The day before giving birth I landed in hospital due to serious bleeding. A young doctor at the ward performed CTG seven times, repeating each time “It’s not good”. Patrick wasn’t meant to survive the day. 

It was a nightmare. The next day, a senior doctor ordered an emergency C-section. I heard a great commotion, an alarm was raised in the delivery room. My baby was swollen, I didn’t hear his cries, for he was immediate put under resuscitation. It was the longest twenty minutes in my life. I was petrified, I had waited for him so many months, and now it turned out that I might never get to cuddle my own child…

They saved him, but after 6 hours, due to too low saturation. The decision was taken to transfer him to another hospital. My baby was incubated for the next two months, and my life turned into one big fear and being in constant vigilance by Patrick’s cot. In the following weeks, a terrible disease was suspected. The material from the genetic test was sent to France, I waited for a month for the results. Finally the verdict was passed - central hypoventilation syndrome. 30 people in Poland are struggling with it, including Patrick… 

My child is only 6 months old and already suffered more than most adults. There were also hospital infections, the fight against sepsis for several weeks, and the need for a stoma. Before leaving the hospital, I was trained in home ventilation. My baby must be connected to special equipment several times a day, about which, a lot can be said, but not that it’s reliable ... I can't trust it, a moment of inattention will end tragically.

The only way to get rid of the respirator is to have a special pacemaker, surgically implanted, which stimulates the diaphragm and helps the child forget about having to breathe. This procedure can take place when he  turns 3 years old, provided that he or she lives. It's brutal what I’m writing, but this is the truth that I have to face every day ... There is also the other side of the coin - a huge cost ... I will not get such money alone, so please help.

Every parent is happy when their child falls asleep, since they gain time for other responsibilities. For me, when Patrick sleeps, I feel paralyzing fear. I can't describe it in words. Will I find my baby alive? Will I still have a chance to feel his warmth? As a mother, I am begging you ... Help me stop the nightmare, drive away negative thoughts. Help my Patrick live.

Dominika - mom.