Hannah's Story

My name is Joan, and I am from Philippines. My daughter, Hannah, who just turned three, has Congenital Central Hypoventilation Syndrome (CCHS.) She has a tracheostomy and uses a ventilator when asleep. During my pregnancy, I didn't suspect any problems until a week before I gave birth. I was diagnosed with polyhydramnios. My OB said I had too much amniotic fluid. I've never heard of such but she told me not to worry. I did worry though, because that was something not normal right? So I Googled what that means and how it affects the baby. From what I read, having polyhydramnios may mean the baby having a congenital problem. Having no history of a congenital problem in either my or my husband's family, I was convinced to just ignore what I read and stay calm. A week later, I gave birth to a full term beautiful baby girl via C-section.


After waking up from sedation, I was expecting to see my baby. Little did I know that while I was asleep, Hannah was already under observation. The doctor then informed us that they needed to transfer Hannah to the NICU. She had pneumonia, had to be intubated, and put on a mechanical ventilator. That day started the saddest nine months of my life. When Hannah was three weeks old, after a number of failed extubations and series of neurological tests, a sleep doctor concluded that Hannah might have what they call CCHS (Congenital Central Hypoventilation Syndrome.) They said that the best option for her to have a tracheostomy tube and stay in the hospital until she become more stable and we were ready to bring her home with all the necessary equipment. She was already 6 months old when the CCHS diagnosis was confirmed. The PHOX2B genetic test is not available in our country and we had to send her blood sample abroad to have it confirmed. We weren't able to do it earlier because the test is very expensive.


It took us 9 long months to prepare for Hannah's homecoming. It was never easy. There was so much to be done, and a huge amount of money was needed for us to settle our hospital bill (no insurance nor good health care here) and to acquire all the necessary equipment. We had nothing left, because the first 2 weeks of Hannah's stay in the hospital had already depleted all our money. My husband and I were even forced to resign from work. All we had then was our love for Hannah and our faith that God would see us through. Indeed, God is good! He called on so many good Samaritans to help us. He made it possible for us to acquire all of Hannah's equipment, and He made it possible for us to bring Hannah home!


Now, Hannah's 3 years old already! We're still struggling, but surviving. She is a very active little girl, though she still hasn't spoken a word. She is fed by mouth but couldn't eat table food until recently, and is still eating pureed foods. She has had many bouts of infections, but only once has she ever required to be brought back to the hospital. That happened just recently. It was very scary, and staying again in the hospital made me relive all the sadness that I have in my heart because of Hannah's condition. I am very happy to be part of Kids with Vents and thank you in advance for all the things I will learn from all of you. I hope I can share something for you to learn too. God bless all our vent families!

Deborah's Story

Hi!  I'm a young adult with CCHS (Congenital Central Hypoventilation Syndrome.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep.  In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.)  I have a trach and am on an LTV ventilator 24/7.  I also have a J-tube for continuous feeds, and use a wheelchair to help me get around.  I take several medications every day, and get weekly SQ IgG infusions of Hizentra.  I see a number of specialists (pulmonary, ENT, neurology, and cardiology, etc.) to help keep me healthy, and I also work with some terrific therapists in occupational, physical, and speech therapy.