Face of CDH - Noah's Miracle

In His Parents Words: 

The storm began on January 4, 2010, my husband and I was expecting our first child Noah.    With him, being our first born, we had high anticipation about the delivery process and becoming first time parents.  During the delivery we had our worst fear confirmed.  Noah’s heart rate had dropped with every contraction, and a rapid assisted delivery was now required.  After a few difficult moments he was delivered but was whisked away to be resuscitated.  The nurses and doctors confirmed that he had a birth defect known as Left-sided Congenital Diaphragmatic Hernia (LCDH).  Noah was transferred to Children’s Mercy Hospital in Kansas City, MO.

Fortunately, my husband and I did not know the statistical outcomes for CDH.  Therefore, our focus was on a day to day evaluation of our son’s status.  The days were very long and seemed to be eternal.  Our focus was moment by moment, with expectations of a breath, hiccup, wiggle, or eyes opening.  I knew there would be no recognition of us, but any response to our voices or touch gave us hope.  Since he was on a ventilator for breathing assistance we were unable to hold, touch, or stimulate him for fear of increasing his breathing difficulties.  As each agonizing moment went by, his team of specialized physicians relayed more information on CDH and decisions we would have to deal with in the upcoming hours.  On day 2, Noah underwent the CDH repair that involved a thorascopic procedure that wasn’t very invasive.  Happily, our son was among the few that were able to correct the defect by a primary repair.  On the morning of day 3 we received a call from the NICU nurse, she told us that Noah was going to be extubated that morning.  As we were driving to the hospital, we noticed the biggest rainbow in the sky.  At that moment we knew that Noah had survived his storm.  We were very blessed that his hospital stay was only one week. 

Our son’s future routine medical examination will include a chest x-ray every six months to make sure there is no reoccurrence.  During his childhood, he will visit a team of specialized physicians that will manage his childhood development.  This team of medical professionals include:  neonatologist, dieticians, psychologist, audiologist, and his surgeon.

CDH is an unpublicized nearly unrecognized devastating birth defect that affects many families every day.  Most people do not know anything about CDH, unless they have a loved one that has been born with this unfortunate defect.  Advances in surgery and therapeutics have not shown great promise.  Therapeutics sustains life minimally.  The future is unknown for diagnostics and treatments.   Worldwide one baby is born with CDH every ten minutes.  The sheer number of infants affected by this disorder should challenge the scientific community to research other avenues of diagnosis and treatment.  Please help our family raise awareness of this monstrous birth defect in honor of the angels and survivors of CDH.

Blessings,

David, Tera, and Noah

We are positive Noah will never stop going forward!

2012 Virtual Walk/Run for CDH Awareness - March 31st

What to do?  Here is one idea from one of the CDH Moms - here is her blog - click HERE

Grab some friends, head out to a local park, neighborhood or anywhere you love to walk and run and run and walk!  Take pictures of you in your turquoise and possibly wearing these or the other "bibs" offered:

If these do not print well for you - please feel free to contact us (cdhawareness@breathofhopeinc.com) and we can send you the originals!  Take pictures and share too! 

More than One Face of CDH

Sofia - an amazingly beautiful, vibrant child who has defied odds with the support of her amazing family and the doctors and nurses who have been part of her amazing life! 

For the last 5 years to not only increase awareness of Congenital Diaphragmatic Hernia but also the importance of donating blood, this blood drive has supported the community! 

One pint of donated blood can save up to three lives and more if they utilize the blood into blood products which aid NICU babies, burn patients and other surgical patients in need.  The only resource for these products is Human Blood, the synthetic scientific stuff just doesn't work as well in our bodies!  Please click here to sign up and for further information of this blood drive which several CDH Families including Sofia's family are hosting and have hosted in Kansas City - Click HERE

Noah - whose family is also joining in to make this blood drive a success!

We know of one CDH infant who went through a total of 5 gallons of blood and blood product.  Yes, GALLONS of blood - for an infant.  Many do not realize that the most fragile of infants utilize a tremendous amount of blood in the hospitals, it saves lives and also gives many families the opportunity to know and love their children for the short duration of their lives on this earth.  It is a gift you can give and it cost nothing but about an hour of your time!  You will feel good doing it and perhaps get some juice and cookies after!  Thank you!

Face of CDH - Whitney Kaholumehekainani

Our journey started at week 21 gestation when my husband and I, along with our moms, went to the Dr. for the anatomy ultrasound. It’s a girl! We were beyond happy. Our moms left to tell everyone and then the Dr. talked to me and my husband. He said they see a mass in our baby’s chest or bright spot on her left lung; calling it Congenital Cystic Adnomatoid Malformation (CCAM). We were referred to a specialist, a perinatologist who confirmed it and told us all about it.

A month later, at week 25, we went back for another ultrasound and saw a different Dr. They saw fluid around the CCAM and referred us for an echocardiogram because her heart was pushed over to the left. The heart ultrasound saw that baby’s heart was developing normal and that the CCAM was pushing it. They say the CCAM is not fatal and that it would probably shrink in size and be just fine by birth.

At week 28 we had another ultrasound with different Perinatologist Dr. While doing the ultrasound, the technician saw something else in the picture so she asked for another one’s second opinion. They were being mysterious and wouldn’t say anything to us. I thought to myself that“as long as it wasn’t life-threatening it’d be okay.” They told us that we had to wait for the Dr. to come in and tell us. I remember this like it was yesterday. When the Dr. finally came in he studied the pictures and did his own ultrasound also not saying anything to us. In his office he told us it was right-sided Congenital Diaphragmatic Hernia, which is life-threatening. Not a CCAM at all. This Dr. explained it all very well to us while I cried the whole time, and I cried the rest of the day. :(

After seeing 5 different Dr.’s, only the 5^thone finally gave us the true diagnosis. It’s a very rare birth defect and I was referred to the only hospital in the state that could care for us. My husband and I met with a ton of different doctors that would help care for our baby when she arrived. Of course I did tons of research on the diagnosis. The doctor’s and nurses had little hope; all the research had very little hope for a right-sided CDH baby, I almost felt hopeless. The neonatologist started talking about comfort care instead of all the scary, painful, and risky procedures to save my baby’s life. I was confused and scared. But this one time, when I went to a book store and picked up a book about infant loss, I suddenly put it back, crying, and decided that my baby would live and that I would do everything possible to help her. I had an MRI done that told us more about Whitney’s hernia. Basically, her liver and intestine were developing in the chest, so both lungs were small, one more so than the other and her heart was entirely to the left. I also got two steroid shots about 4 weeks before the birth to try to help her lungs grow. I had an Amniocentesis done to make sure there were no chromosomal abnormalities. I drove 30mins, both ways, twice a week for ultrasounds and Non-Stress Tests. I also bought a few “new baby” items to help me prepare for having a baby come home, although; they were basically telling us to buy a casket instead of a crib. I also prayed a lot. I mostly prayed for comfort and understanding and the courage to accept God’s will. This sort of thing is, understandably, extremely hard on first time parents.

When we picked Whitney’s middle name, we knew we wanted it to be Hawaiian. Thomas is part Hawaiian, so we were thinking family names. But they didn’t seem to fit. His dad told we could just make one up. So one day my husband asked me to tell him a meaning and he would research it. I said that Whitney is “Strong and Beautiful like the ocean.” Translated to Kaholumehehkainani.

I was induced at 40 weeks and after a few short hours of labor; Whitney was born on Wednesday, July 21, 2011 at 3:09PM, weighing 6lbs 10oz. I’m grateful I was able to have her vaginally and that my husband was able to cut the cord. And then they intubated her immediately. All I could do was look at the backs of several Doctors surrounding my newborn girl. I do remember one nurse watching me while I was sobbing. I wondered what she was thinking. I held Whitney’s hand for a few precious seconds before they took her away to the NICU. I continued to cry, so much that I couldn’t even talk. I wanted to tell Whitney to be strong and that I love her and that I need her. I wanted to ask her if she was okay. I was so scared for her.

I wasn’t able to see her for quite a few hours afterwards because I had gotten an epidural. My whole family was with me but I didn’t want them to see her before me. Eventually I did see her and so did our families. Even though my husband and I were exhausted, we took turns taking every one back one at a time because we didn’t know if Whit would make it through the night. From then on, it has been a roller coaster for everyone, especially Whitney. The next morning, I signed papers for Whitney to be put on the ECMO machine. My husband wasn’t there but I had already decided to do everything possible to save her life. That afternoon, before she was even one day old, they hooked her up to that heart/lung bypass machine. I was discharged but they let us stay in a special room for parents of critically ill babies. Whitney was able to be weaned off ECMO at six days old. The neonatologist told us“these babies have maybe a 20% chance to survive.” I whispered... So there’s a chance. Somehow, I just knew she would survive. On day seven they performed the CDH repair surgery. They repaired her right side with a large gortex patch. They said that they were confident that Whitney would heal very well. I always asked Whitney to promise me that she’d be “okay.” I know it was asking a lot of her and I feel bad about it, but anytime there was a big hurdle, I asked her. I don’t want to list all the details of every little medical thing but like I said previously, it’s a roller coaster, and not a fun one at that! I was always asking Whitney if she was okay. I called the NICU all the time and just asked if she was okay. I just needed her to be okay, and they always told me that she was “critical but stable.” I know that she was never alone and it helped to picture Heavenly Father holding her in his arms. 

I spent as much time as I could by her side. Holding her hands, singing to her, reading to her, praying with her, and crying with her. Thinking back on it I wish I would have spent even more time with her. But all the nurses there said that my husband and I and our family were there more often than any other parents. So after 2 weeks, they kicked us out of the room at the hospital. We lived 30 minutes away and that was way too far for us, but we didn’t qualify for the Ronald McDonald house. Luckily we had a good friend who lived nearby the Hospital. We stayed with her for the next few weeks until we were satisfied that Whitney would survive.

I held my daughter for the first time at 15 days old. The first time I heard her voice was when Whitney was 3 weeks and 2 days old when she was ex-tubated. The first time that I was certain she was going to be okay was when she could breathe on her own; she was off of oxygen, if only for a couple days. The first time I was able to feed her. Her first bath. All of these things were miracles. It took about 1 ½ months to move from the NICU to the Annex, where babies are just working on feedings and getting ready to go home! So, to make a really long story short, Whitney came home when she was about 2 months old, a total of 56 days in the hospital. She came home dependent on oxygen and a monitor. We made a huge banner and hung it on the house. A lot of family members were there to same this special moment with us. 

And a new adventure began! She struggled with eating for a really long time. At 5 months old she needed a feeding tube. That also has been a roller coaster ride with many ups and downs. Whitney was gagging, vomiting, and had oral aversions. Within Whitney’s first year of life she needed many tests and procedures. She is weaned of oxygen and is on Silenafil with a Cardiac Cath to balloon open her left pulmonary artery. She has a G-tube and is completely dependent to survive. She is pretty small for her age but is growing steadily! She is on prevacid and bethanechol for GERD. She’s needed x-rays, Modified Barium Swallow Studies, Upper GI’s, Endoscopey’s, echo’s, and synagis shots. She continues to make progress with feeding therapy, speech therapy, and occupational therapy. She graduated Physical therapy by one year of age! Even though Whitney has some special needs, she is a very smart and happy little girl! We are so grateful for her and thank God every day. I knew it wouldn’t be easy, but it is worth it!

We agree wholeheartedly! 

Another Face of CDH - Gibson, an Amazing Warrior

Gibson in the NICU

Gibson's x-ray after surgery

Very proud Dad and Mom!

I have business to do!

Don't you wish you could wear this look this well?

In his parents words:

Our son, Gibson Jones, was diagnosed with a left-sided Congenital Diaphragmatic Hernia (CDH) at our twenty week ultrasound. We were told his chances of surviving this journey were extremely low. He was given a ten percent chance of living. Before this day we had never heard of a CDH. It has changed our lives forever.

We searched across the United States to find a medical facility that could handle such a serious condition and after being referred to a team of physicians and nurses in Salt Lake City, we discovered that the best team in the world was located just 200 miles south of us. Because we had found a highly qualified team of doctors and equipment, we relocated to Salt Lake during the last month of the pregnancy. Gibson was born March 31, 2011, in Salt Lake City at University of Utah Hospital and was then transported to Primary Children's Medical Center where he spent the next few months. As destiny would have it, this was National Diaphragmatic Hernia Day.

 Gibson had a rough start at life and required extracorporeal membrane oxygenation (ECMO), which is the strongest form of life support, when he was only six hours old. He was on ECMO for four days and it would have been longer, but he developed a brain hemorrhage and had also suffered a cerebellar stroke. He was taken off of ECMO and later that evening had a pulmonary hemorrhage. He was dying. The nurses and doctors had done everything they possibly could, but nothing was working and we all feared we would lose Gibson that night. Thankfully, a brilliant and talented surgeon was on-call that night and gave Gibson a special gift. He agreed to do Gibson's diaphragm repair surgery even though he was likely not going to survive the surgery; but he was definitely not going to live without it. To everyone's surprise, Gibson survived the surgery. Gibson survived the next twenty-four hours. Gibson survived his brain bleeds. He also survived pneumonia, a bowel obstruction surgery, and three months in the Neonatal Intensive Care Unit (NICU). He made an amazing recovery. We had a miracle baby!

When Gibson proved he was ready to come home, he required oxygen, had paralyzed vocal cords, and a feeding tube because he had an oral aversion. He was on eight different medications and was still very weak. Seven months later, Gibson has a permanent feeding tube in his belly and is learning how to eat normally. Due to the CDH, Gibson’s left lung was unable to develop normally. He is still on oxygen because of the undersized left lung, but he is getting stronger and is requiring less assistance. His left lung has grown some and his right lung has grown to compensate for the lack of the left. Our goal is for him to be off of oxygen completely in the coming months. Developmentally, Gibson has caught up with children his age and is as busy as any other little boy. He is so happy and so full of life. He has made us the proudest parents in the world and he is our little miracle.

 We are so thankful for modern medicine and the many, many doctors and nurses who took amazing care of Gibson while in the NICU at Primary Children’s Medical Center. They went above and beyond for our family and completely fell in love with Gibson. 

We have fallen in love too!



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!

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!

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.

 

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!