Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Tuesday, February 28, 2012

Rare Disease Day - February 29, 2011

Breath of Hope has long supported Rare Disease Day and we are a Member Organization of NORD.

Please go to this link and click on the Raise Your Hand and $1 will be donated by Lundbeck to the NORD General Research Fund.  A simple way to help fund research for rare and often overlooked diseases and medical conditions.  Thank you!

Sunday, February 26, 2012

14 Week Old Face of CDH - How YOU can help too!

Sir Isaac finally was held by his Mommy last week!  A long time to wait to hold your baby but this family has been through so much in such a short period of time with Isaac.  His grandmother, Chris, submitted an iReport to CNN which we all are trying to get rated higher to possibly have a story on CNN about congenital diaphragmatic hernia and CDH Awareness Day, March 31st.  Please go to this link click HERE to read more of Isaac's amazing story, like this and recommend this and share it any way you can!  If everyone did this little bit - it makes a huge difference! 

Thank you!

Breath of Hope Website

Will be down for maintenance for about 4 - 8 hours today.  Please stay tuned...we will have another special Face of CDH with something you can do to help for CDH Awareness.

Our website will also be re-vamped/updated and we will be asking you all to let us now of fundraisers, events and your own websites and blogs to add to our Community Page!

Thank you!

Tuesday, February 14, 2012

What a Face for CDH! Abel's Amazing Story!

In his Mom Amber's words:

In April 2010, we found out that we were expecting our 4th child. On , our lives were forever changed. During a routine ultrasound we were told that our son had a life threatening birth defect, the diagnosis was a Congenital Diaphragmatic Hernia. CDH occurs when the diaphragm fails to fully form or close during 7-10 weeks gestation. The hole allows stomach contents such as the intestines, stomach and liver to migrate into the chest cavity which impedes lung development. Congenital Diaphragmatic Hernia occurs in about 2500 births and has a about a 50% survival rate. Due to the severity of his case, Abel was given a 10% chance of survival at birth. After much thought, we decided we wanted to get a second opinion. That is when we met with Dr. John Kinsella and Dr. Jason Gien at Children’s Hospital Colorado . They reassured us that we would remain optimistic until Abel gave us a reason to believe otherwise. We loved the Family Centered Care that CHC offered. We walked out the front door of CHC with a renewed sense of hope. We knew that we were choosing the best hospital, doctors and nurses to care for our son.

Abel was born on October 22, 2010. He was immediately placed on a mechanical ventilator to help him breathe and was transferred to Children’s Hospital . Our priest was on stand-by, waiting to baptize him. 12 hours after birth, we were notified that Abel would need to be placed on ECMO in order to keep him alive. ECMO is a lung/heart bi-pass machine that would oxygenate his blood and allow his heart and lungs to rest for the next 7 days. My husband signed the consent and we waited while he underwent his first major surgery. He was immediately baptized after surgery because it was clear how very sick he was. On day 2 he rested well on ECMO. On Day 3, the doctors discovered bleeding around Abel’s heart. They had to perform a major surgery and open his chest to stitch his pulmonary artery to stop the bleeding. The doctors were now forced to make a very tough decision. Heprin is a blood thinner used in the ECMO circuit to prevent blood clots. Because of the blood thinner, Abel’s blood could not clot and they ran the risk of him bleeding out due to the chest surgery he had just undergone. They needed to decide whether to repair his hernia while he was still on ECMO and then remove him immediately from the ECMO machine or to take him off ECMO then perform his hernia repair. The decision was made that they would repair his hernia while on ECMO then immediately following that surgery, they would proceed to remove him off of ECMO in hopes of stopping the Heprin and allowing his blood to clot. We waited in the NICU waiting room for several hours with our closest family and friends when they performed the surgery. After surgery, Dr. Karrer came out to the waiting room and advised us that in 22 years of doing diaphragmatic hernia repairs, Abel had-by far-the worst case he had ever seen. He wasn’t able to fit his intestines into his abdomin so they were placed in a bag called a silo, outside his body. Dr. Karrer proceeded to tell us that Abel had lost a lot of blood and that he probably wouldn’t make it through the night but he had done the best he could do for him. Within a few minutes the Nurse Practitioner came out and advised us that Abel was bleeding but stable. She looked at us with more empathy than I had ever encountered in my life. She said “It is going to be very touch and go, minute to minute for the rest of the night”. It broke her heart, to break ours. We geared up for the long night ahead and spent time in prayer in the Hospital Chapel. About 30 minutes later, one of the Doctors came out and said “Abel has taken a turn for the worse, he is bleeding from every where. He isn’t going to make it. Do you want to see him?” My husband and I followed her back to his bed spot. His oxygen was at 40% and his heart rate was over 200. We knew it was bad. I walked up to Abel and my first thought was that he needed to hear my voice, he needed to know that we were there. So I began talking to him. I said “Abel, it’s Mommy, I’m right here with you. Daddy’s here too.” I started rubbing his head and his feet. I told him “Keep fighting Son, we’re all here fighting for you, just a little bit longer. You brothers haven’t gotten to meet you yet. We want to see you learn how to ride a bike, swing on the swings, play at the park. . .Celebrate your first Birthday. Keep fighting.” We told him how much we loved him. Abel started to bleed out of his nose, the nurse cleaned him up. As I continued to rub his jet black hair, he started to bleed out of his nose and mouth. This time, I started to clean him up and I realized that this was the moment we had tried to prepare for. In this moment, I knew I needed to be selfless. I leaned down, kissed Abel on the head and I said “Son, if you’re tired, just tell me and I’ll understand.” I needed Abel to know that we would understand if he was tired and couldn’t fight anymore. We needed him to know that it was ok, he had suffered enough. I was asked to step away from his bedside so that they could take an x-ray. Within a few minutes, Dr. Gien looked at us and said that he was stable. We had just witnessed a miracle. Abel had pulled through and he was stable, the doctors, nurses, surgeons and all the NICU staff had never given up on Abel. They continued to work on him, when most would have given up. All because Dr. Gien believed he could still save his life, and he did.

After over 17 weeks in the NICU at Children's Hospital Colorado, enduring over 6 major surgeries in the first 5 days of life and conquering many many medical battles, Abel came home to be with brothers and us on Janurary 24th, 2011.

Although he still struggles with some medical complications due to CDH, he is a normal, happy, outgoing, walking and on-the-go 1 year old.


Wednesday, February 1, 2012

Avery's Breathtaking Story, Another Face of CDH

Avery was not diagnosed prior to her birth.

Avery - 2 hours after her repair surgery.

Eight weeks later she was discharged to go home to her family!

Avery at 11 months!
If you want to follow her story here is her family blog:  click HERE

She is growing more beautiful every day and now she is walking!  Every parent wonders if their child will walk and when they see it for the first time - or any firsts, there are tears of joy!