CHERUBS - The Association of Congenital Diaphragmatic Hernia Research Awareness and Support
Raising Congenital Diaphragmatic Hernia Awareness, Supporting Families with Information and Friendship, and Advocating for more CDH Research Learn More
Cause Bulletin
Happy 15th Birthday CHERUBS!!!! :)
Happy 15th Birthday to CHERUBS!!!!! Our charity was founded on February 7, 1995. We have a new homepage, new CDH Awareness Shop, new info for parents, more web sites and many great projects. The site is up - still under construction though so pardon our mess! :) http://www.cdhsupport.org
Recent Cause Activity
my niece and nephew's unborn baby has CDH and needs all support & prayers for her to come into this world healthy.please support this awareness to understand the cause.
I have a big story to share so when I get through typing it out i will post it here. If anyone wants to talk about CDH I am here too. We all have something to share weather it be positive or negitive lets all help eachother and Praise God in the good times and Praise God in the bad times. Love u all
Happy 15th Birthday to CHERUBS!!!!! Our charity was founded on February 7, 1995.
We have a new homepage, new CDH Awareness Shop, new info for parents, more web sites and many great projects.
The site is up - still under construction though so pardon our mess! :)
http://www.cdhsupport.org
thinking of your god daughter Megan <3 am praying that she's going to be okay I'm sure she will! all thoughts and prayers sent her way!
this is the story of baby Piper Audrey Brown... my little unborn Godchild
Thursday January 28, 2010 we had our anatomy scan for my 20 week checkup with my ob doctor in Dothan. I first went into the ultrasound room and had the anatomy scan and then waited outside the room for the nurse to assign me to a room to have my checkup appointment with my doctor. As I was sitting outside the ultrasound room with my mother we noticed that the doctor went into the room that we just came out of and I immediately asked my mom if she saw someone go into the room after me, knowing and understanding that when a doctor went into a ultrasound room to check on something its normally not a good sign. Before the doctor came out and I could notice if another patient indeed went into the room after me I was assigned a room to wait in. We waited awhile for the doctor to see me and passed the time looking at the wonderful new pictures I just got from the ultrasound. The doctor finally came in and we went over my results from my lab work from my last appointment I had 3 weeks prior. The results all came out negative and low risk for birth defects of down syndrome and spina bifia. After we went through those results that I have been looking forward to and was relieved to hear that everything was ok, she started to explain to me that she thought she might have discovered something through the anatomy scan that she would like to get a 2nd opinion on from a specialist. She explained her diagnoses in a very short and confusing manner that I did not understand one bit. I went home that evening and tried researching on words I could remember her telling me and found horrible results. I immediately freaked and was horrified that this 2nd opinion I was getting was a very serious matter. The next morning I called my doctors office and asked if a nurse can explain to me again what exactly the doctor thought she saw and the problem that we may have. She took my name and number and I received a phone call from my doctor soon after. Again I still did not understand or could grasp her explanation of everything again but I was at least able to get the name of what she thought she was seeing. It was a hernia on the diaphragm. I did my research thing and I found that this is a very high risk birth defect. The entire weekend I researched and educated myself on everything on this case and other cases that were similar. I wanted to be aware and as knowledgeable as I could be before I had to see my specialist so there would be no surprises or misunderstanding again next time. I had my appointment with a high risk ob specialist in Pensacola, Florida on Tuesday at Sacred Heart Hospital. My doctor was very awesome and had a fantastic staff. I was seen immediately into the ultrasound room. I had my support group with me which included my mother, mother-in-law, and sister-in-law (Piper's godmother). After a very short wait in the room we were seen. I was very nervous when I realized how many people had to be in the room with us. We had the ultrasound technician, a nurse, and a genetics counselor. I immediately started to feel the seriousness and started to shake. They spent a long time measuring every organ and body part through the ultrasound. After they were done the specialist came in and took a look and started to explain to me everything and what was going to happen. Piper is diagnosed with Congenital Diaphragmatic Hernia also known as CDH. It is a very serious birth defect that has unknown reasons for the cause other than its just the way her body has developed. Its a hernia in her diaphragm which means the muscle that separates her abdominal organs from her chest cavity has a hole in it. There are different levels of severity of this affect which is how big is the hole? Well we can automatically assume it's a severe case because her stomach and part of her liver have gone through the hole and into her chest cavity moving the heart to the right side of her chest. With these abdominal organs in her chest cavity they are preventing her lungs from developing fully. The good news is that there are tissues of a lung trying to develop which we can work with and that she is perfectly fine while she is living inside of me. I am breathing for her. The scare is when she is born there has to be immediate attention and care. We are now going to be transferred to have the delivery at a level 3 hospital that has a machine called ECMO. This machine is a life support for her as soon as she is born into this world. She will have surgery just to be hooked up to this machine. This machine will be her heart and lungs until her lungs can heal on there own. After her lungs heal and she can be stable on her own they will take her off the machine and do the surgery to move the organs into the right spots and seal the hole in her diaphragm. We have been offered to be seen by many hospitals all over the country of our choice. We have decided to get a referral for Shands Hospital in Gainsville, Florida. Its close by, its a level 3 hospital with ECMO, and has a promising survival rate for CDH babies. I will have to be living near by about a month before my due date. We are hoping for a full term pregnancy though which is 40 weeks. We are being offered to stay at the Ronald McDonald's housing facilities which will be a huge help. We are also working on trying to get Aaron home as soon as we can and as long as we can. As soon as we get all the results from every test our doctor will be working on a packet to send out a red cross emergency message for down range. We have a very long journey ahead of us with no guarantees. Please keep our family in your thoughts and prayers. We can never have too much prayers or hope for this situation in particular. This is very much in Gods hands.
I'm working on Cody's foundation.. Looking for help in making angel graphics for CDH..
The tubes only work in psp.. anyone want to help??
were to start my grandson was born with CHD hes still in hospital my daughter is only young i worry for them born wot life holds for them i pray he will do well he had is op at ten days old was never on a vent but they think there might be brain damage his blood sugar keeps dropping and till he was born id never heard off it before the doctors dont explain it much and im reading up on it online so if anyone can help me find some sites on it it would help my family out alot my grandson is so sweet i wouldnt be with out him my prays go out to everyone xxxxxx
my son dakota is now 2 yrs old, he was gave a 4% chance to live after he was born. he has a trach and on a vent. the good news is he is weaning off the vent! He made it though ECMO 9 days, had his cdh repair at 1 month old. HE makes me so proud to be his mommy! he has a angel by him 24-7. Looking at him now you'd never know he was so isck once. this video shows the true dakota He is my life and my love.. besides his sissy.. http://www.onetruemedia.com/shared?p=...
HE loves VIN Diesel, LOL
my daughter was born 3 11 2008. she struggled 3 months in hershey nicu. thank you so much for all you do to help people like us go through this horrible time. my baby is proof miracles happen. she was given 5% to 15% to live......she will be two.....
my granddaughter was born with CDH along with serveral other problems.....we just celebrated her 9th birthday....God is good!!!!!! just so you know she is living proof that even when a human is in a comatose state they are aware of what is going on around them..when this angel was born she was kept on sedated and on life support during the first few months on life.. I would go daily and rock her and sing to her .. (doddlebug , doddlebug go to town, doddlebug doddlebug turn around).....after quit a few surgeries and months we brought her home ..when she finally learn to talk she called me doodlebug because thats how she remembered my voice ...and to date I am still doddlebug.. so please even if you don't think they can hear talk, sing, laugh, read whatever you feel it will pay off big time in the end.......
My little girl was born March 29, 2006. I had a completely normal pregnancy with 7 different ultrasounds. None of these showed any signs of CDH. To my horror my daughter was diagnosed with CDH, something I had NEVER heard of before and taken to another hospital one hour away. She was operated on eleven hours after birth. She had left sided CDH, the hole in her diaphragm was about and inch and a half. Most of her intestines had moved as well as her stomach and spleen, her left lung had apparently been able to develop properly but was collapsed at birth. Her surgery went well and she was never put on a ventilator before or after birth. She began mouth feeds at 3 days old although they didn't go well until she was about a month and a half. She had a feeding tube through her nose for most of the first month. After one month exactly she was released to come home. At the beginning she had other complications such as kidney stones and a bleed in her brain both of which healed. She did show some signs of physical delay at her first physical therapy visit, but was soon ahead of schedule sitting at 5 months, crawling at 6 months and walking just before 11 months. She is currently coming up on her 4th birthday a happy, healthy thriving little girl who is also bilingual as we live in Italy and has excellent fine and gross motor skills. She has a large scar across the left side of her chest, but that is the only sign of CDH that she has. I pray for all of those families that weren't as lucky as we were, and want to give hope to those waiting, because I know how awful the unknown can be and knowing that there can also be a positive outcome can hopefully keep others strong. I wish I had known about CDH and this site when I was going through it.
my little princess was born with an undiagnosed right sided cdh, it was discovered very soon after she was born as she was struggling to breath, they worked very ast to make her stable and when she was 3 days old she had an opperation to repair her diagphram and put everything back where it belongs she also had a ladds procedure and an apandectomy, after that she started getting stronger and stronger, she had a couple of set backs along the way like catching mrsa and having trouble feeding but 8 weeks after having her i got to take my princess home! she had trouble with reflux and feeding but they soon faded out, she is now 2 years old and is a perfect little girl, apart from being a little small and having countless scars you would never know there had been anything wrong with her!! i thank my lucky stars everyday that my little cherub is here and when i read storys on pages like this about the cherubs with wings it makes me realise how lucky i am!!! i send my love to all people with cherub babys surviving and with wings your all very special people!! xxxxxxx
In memory ofTYLER ILS...the love of my life was borned 2/17/97 we found out at my 20 week ultra sound that he had CDH. We were in the Childrens Hospital in Milwaukee WI for 51 weeks. We brought him home 2 days before his first birthday. He was missing 85% of his diaphram and came home on a vent. He has changed my life. I was able to hear him say he loved me and call me Mommy! I wait for the day I get to see him again in heaven and hold him in my arms again! We lost him 12/09/99. He was 21 months old! God bless you all!
Jennifer, most non-profits have their own set-ups for fundraisers. Plus, they would know the laws in your state. Contact them for info - they probably have how-to instructions also. :)
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great to hear !!!!!! happy 15 years cherubs !!!!!!!!!!!!!