Kids with Vents Facebook Group

We started out as a support group on Yahoo Groups, and we recently added a Kids with Vents Facebook group as a convenience to our families.  The Facebook group is very popular and we already have over 350 members!  If your child uses a ventilator or Bipap/AVAPS, you are welcome to join us!  Teens and young adults on a vent (or Bipap/AVAPS) from a childhood condition or injury are also welcome!  To join the Kids with Vents Yahoo group, just click on the link above the slide show.  To be added to the Kids with Vents Facebook Group, go to: https://www.facebook.com/groups/kids.w.vents/ and click on "Join Group."  Hope to see you there!

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!

Welcome to the Kids with Vents Blog!

Kids with Vents started in June 2010, and we are growing fast!  We have 60 members with 55 vent kids and young adults.  Our kids come from all over the United States, and we also have several international members from the Philippines, Singapore, Canada, and the UK!  


Our Blog features member profiles, group events, helpful information, and lots of great links!  Our support group link is: http://health.groups.yahoo.com/group/Kids_with_Vents/  Please contact us at kids_with_vents@yahoo.com for more information.


Hope to see you at Kids with Vents!