Caleb's CDH Story
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Decision Day...

5/29/2014

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As you can imagine, the days following our appointments at Hopkins, were unbearable.  Tim seems to be holding it together pretty well, however, I on the other hand have been a complete disaster. We are exactly 20 weeks along and facing one of the toughest decisions we've ever had to make not only as parents, but as a couple.  Whether we decide to terminate or continue the pregnancy, we both have to be in complete agreement as we know a decision of this magnitude could tear two people apart if one of us believes we should take a different path.

No matter what our reasons would be for terminating, we know that the amount of regret could place a heavy burden on both of us.  I am only 32 years old and young enough to get pregnant again, however, we made the decision that at this point going for a 7th pregnancy would not be an option for us. Although the chance of having another CDH pregnancy is less than 2%, the last two years have been an emotional roller coaster with the other three repetitive miscarriages.  We have decided that no matter what the outcome is for this pregnancy, we will move forward beyond thankful to have one healthy, loving, and energetic little boy.  

The one thing we learned since finding out about Caleb's diagnosis is that no CDH story is the same.  The babies with the worst prognosis sometimes do the best after birth and vice versa.  That being said, our main concern is his quality of life during his toddler years and thereafter.  Unfortunately, the complex surgeries needed for CDH babies to survive were not being performed decades ago and babies with severely compromised or fragile lungs were not placed on the extracorporeal membrane oxygenation (ECMO) machine.  This temporary bypass technique is used on 50% of CDH babies and oxygenates the blood and allows the lungs to rest.  Therefore, the stories of older CDH survivors are difficult to find, which leaves one of our major questions concerning Caleb's quality of life unanswered.  


Through our reading and guidance from doctors treating CDH survivors, we learned that after a tough couple of years and many obstacles to overcome, CDH children are physically active and learning at the same level as other children their age.  This information, in addition to feeling the endless kicks and flutters and seeing the numerous ultrasounds of our baby boy has lead us to one conclusion...

We have decided to continue the pregnancy and hope that Caleb will be strong enough to overcome the many trials and tribulations he will face on his journey.  If he is anything like his big brother, we know he will become another miracle amongst the CDH survivors.

Our heads are still spinning trying to process everything, but we know that the decision we have made is the best for our family.  Brody is our #1 priority and although our biggest concern is the impact this will have on him, we know that he is young and hope that he will overcome whatever curve balls are thrown our way after his baby brother is born.  

We will be forever grateful for the support our family and friends have given us during this very difficult time and know that they will continue to be there every step of the way.
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Our Visit and 2nd Opinion at the Johns Hopkins Hospital

5/27/2014

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It's been two weeks since we learned of our boy's diagnosis and I am 19 weeks/5 days.  The questions are endless and still at some point we have to make the most impossible decision as parents.  The information we received at our visit to the Children's Hospital of Philadelphia (CHOP) was helpful, but the path in which we should proceed is blurry.  We discussed the diagnosis with my OBGYN and learned that he, as well as a few other doctors in his practice, had many patients that chose to terminate the pregnancy once they learned that their child had CDH.  As you can imagine, this was extremely difficult to hear.  We don't know how we can possibly decide between terminating and proceeding when we still have so many unanswered questions.

CHOP is an amazing hospital for birth defects, however delivering there may not be practical for our family.  Not only would I have to relocate to Philadelphia at thirty-five weeks to be monitored closely before delivery, but our stay after Caleb's birth could be several weeks to months since he will have to fully recover from his extensive surgeries and be strong enough to go home. Although we will have unconditional support from our family and friends, work commitments and the distance to CHOP would prevent them from visiting often.  Most importantly, Brody will be starting kindergarden in August and we couldn't possibly imagine him going through this journey without our support.  Especially during this time, just being able to see his smile and receive his endless hugs and kisses will be what gets us through the most difficult time in our lives.  Our only hope is that the doctors at Hopkins will be able to provide the same care (if not better) for our baby boy's CDH as CHOP. 

Our day at Hopkins will be very similar to that as CHOP and we had a long day full of appointments.  To help get some clarification, we prepared a list of questions for each doctor.  The ultrasound and meeting with the perinatologist, a doctor who specializes in the care of the fetus in complicated, high risk pregnancies, confirmed similar results to those we received at CHOP. Following that appointment, we met with one of the surgeons in the Division of Pediatric Surgery that would be responsible for performing the complex surgeries needed to repair Caleb's CDH, which will occur as early as three days of life. An incision will be made in his rib cage and the organs in his chest will be guided back down into the abdomen.  Also, the hole in his diaphragm will be closed to create space and allow his lungs to continue to grow through early childhood. To put Caleb's birth defect into perspective, Hopkins performs about 15-20 CDH surgeries a year.  Finally, we met with a Neonatologist and took a tour of the neonatal intensive-care unit (NICU), which is where Caleb will go immediately after birth to receive specialized care.

Still, we left Hopkins today with three major concerns and questions no one would be able to answer.  How would Brody handle the birth of his little brother and what impact would Caleb's complicated diagnosis have on him since we as parents would be at the hospital many days and nights caring for his sick brother?  Since every CDH story is different, we did not truly know what Caleb would endure during his first days, weeks, months, and years and what his quality of life would be like growing up.  Lastly, we are unsure of the financial burden this will place on our family and can only hope that we can afford the extensive medical bills while also continuing to pay our mortgage and other bills. 

One huge relief today was coming to the conclusion that if we decide to proceed with the pregnancy, we would feel 100% comfortable with delivering at Hopkins as we know Caleb will receive the best care possible.  In the days ahead, we must make what seems like an impossible decision...
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Happy Memorial Day Weekend

5/25/2014

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It was a beautiful Memorial Day weekend and nice to spend it with family and friends.  Even more so, it was helpful in taking our minds off the situation for a little while at least.

One moment during the weekend, we were gathered outside talking and someone had asked Brody if he was excited for a little brother.  Unknown to her, we had not told Brody yet as we were still trying to wrap our heads around everything.  When Brody originally found out that he was going to be a big brother, he repeatedly asked for a baby sister.  I would always reply "all we want is a healthy baby..."  So when asked for the first time since finding out the news if he wanted a brother or sister, he replied "I just want healthy brother or sister." It breaks my heart knowing we have already been dealt a different set of cards. The hope is that one day, he will be as healthy as every other kid his age, but we know that getting to that point may be a long journey for all of us, especially our little boy.

We have been trying to read up on how to prepare Brody for a sick sibling.  He is only 4 years old (he will be 5 when Caleb arrives) and we are not sure how much he will truly understand, but we know at some point, we will have to prepare him for the potential of whats to come.

We found this article and are hoping it will help guide us in the right direction...

Brothers + Sisters Tools to Help Children When a Sibling is Sick ~ Children's Hospital of Philadelphia (CHOP), Child Life, Education & Creative Arts Therapy
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Waiting for our Appointment at the Johns Hopkins Hospital...

5/22/2014

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In the week and a half we had between our visit to CHOP and our scheduled appointments at Hopkins, we did what every parent does and began researching CDH on the internet.  There were thousands of stories, both successful and tragic, and we realized quickly that no CDH story was the same.  We were intrigued by a blog about a boy in a neighboring town that was a six-year-old CDH survivor who was born at Hopkins.  It caught our eye because he was born on our due date of October 9th and he played in the same soccer league and wore the same jersey as Brody last fall.  We reached out to his family and learned, that although he is surviving CDH, it is not without many trials and tribulations as he remains on a feeding tube, requires oxygen at night, and has a nurse around the clock to help monitor his daily intakes.  Even though he has had a few setbacks and lingering issues, he functions like any other six-year-old boy as he attends school, plays sports, and is very active.  His story gave us hope, but in all honesty it also scared the hell out of us.  

The worries were endless and no matter how many questions we ask, the direction in which we should proceed remains unclear.  Our number one priority is Brody and no matter what path we take, his life will be impacted drastically.  If we terminate, Brody will never have the chance to be a big brother because we have decided (at this point) that this will be our last pregnancy regardless of the outcome.  If we see this pregnancy through, we will not know until then how he will handle the change and the impact it will have on him, as he will also be adjusting to his first month of kindergarten.  Since no CDH story is the same, it is impossible to know the quality of life and future for our baby boy if he survives his first days, months and years.  We know that some of the long-term issues include chronic lung disease, asthma, gastroesophageal reflux, developmental delays and ventilation requirements due to prolonged hospitalization.  The majority of survival cases found online are children under the age of ten and stories of adult survivors are rare making it hard to truly know what he will endure in his life during his older years.  Finally, the financial burden this could put on our family is unpredictable.  Although this should be our last concern, there could be extensive medical bills due to lengthy hospital stays, surgeries, medication, and medical treatment needed throughout his life.  With a mortgage and other monthly bills, it is scary to think about the financial impact this could have on our lives if our insurance does not cover the majority of his medical expenses.  
 
Never did we think we would be analyzing both our health insurance and life insurance, as no matter how much we want to hope for the best, we must also prepare for the worst.
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Our Visit to the Children's Hosptial of Philadelphia

5/13/2014

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Two days after our appointment at GBMC and 19 weeks along, we were headed on a two-hour journey to one of the best hospitals in the country for birth defects, the Children’s Hospital of Philadelphia (CHOP).  We were referred to their Center for Fetal Diagnosis and Treatment (CFDT) and they had scheduled a comprehensive evaluation.  The fetal consultation consisted of the following:

*  A high resolution ultrasound, which lasted two and a half hours, was performed to confirm the diagnosis and the side of the hernia, identify any additional malformations, determine lung size, and calculate a lung-to-head ratio (LHR) and an observed over expected ratio (O/E).  The ultrasound also determined the position of the liver. 
*  A fetal echocardiogram lasted one hour and determined if there were any structural defects of our baby's heart.
*  A one hour fetal MRI that provided further anatomy detail regarding the liver position.
*  A meeting with their genetic counselor who reviewed our family history and prenatal genetic testing.
 
Once the diagnostic exams were complete, we met with a high-risk maternal-fetal medicine specialist (MFM), a pediatric surgeon and our nurse coordinator who reviewed the results of all exams and confirmed our baby boy’s diagnosis. We discussed all treatment options and prenatal and postnatal care, as well as their delivery recommendations. They answered our questions and provided us with additional educational information about CDH to take home. 

While at CHOP, they determined the severalty of our baby’s CDH, by evaluating major factors such as LHR, observed over expected ratio, and liver position. Not only were his ratios lower than we had hoped, but the tips of his stomach, bowel, and liver had also herniated and moved up in his chest, indicating a more severe form of CDH.  Two things that proved favorable for him were his size since he was measuring six days bigger and his amniotic fluid being within normal limits.  In order to ensure there were no chromosomal anomalies in additional to the CDH, an amniocentesis was recommended, but unfortunately that carries its own risks and we had to decide if would pursue that farther.  They stressed that although they could give a prognosis on the severity of the CDH, until he is born, there isn’t a test to perform during pregnancy that could predict his lung function.  Our baby boy’s lung’s function would only be determined after he was born. Overall, in their opinion, our baby was not the worst or best case they had ever seen, but he fell in the middle range and they predicted a 70% chance of survival.  
  
The ride from Philadelphia seemed like forever and yet our day didn’t seem so bad when we arrived home and were again immediately greeted with the biggest smile and hug from Brody.  Our heads were spinning with all of the information we had received and we were now faced with one additional decision and that was if we decided to continue the pregnancy, would it be practical for our family to deliver at CHOP.  Delivering at CHOP meant I would be relocated to Philadelphia at 35 weeks and we would remain at the hospital for weeks even months depending on his recovery.  His progress would be tracked in the days following his birth and they would perform a surgical repair of his CDH, as early as three days of life.  This would entail guiding the organs in his chest back down into the abdomen and repairing the hole in his diaphragm.  In addition to the surgical repair, he could require specialized equipment such as an oscillator ventilator, heart lung machine (ECMO) or nitric oxide.  His length of stay in the NICU would widely depend on his prognosis.  Although CHOP is one of the best hospitals in the world, we knew that being away from our family and friends, when we needed the support most, would be incredibly difficult for everyone, especially Brody.
 
We discussed our options and believed that meeting with the team at Johns Hopkins Hospital, another amazing hospital, would be our next step.
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Bringing Everyone Up to Speed...

5/13/2014

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The day everything changed...our baby's CDH diagnosis.

We found out we were pregnant again in February and are due on October 9, 2014. This is our 6th pregnancy and after an ectopic pregnancy, a healthy boy, and three repetitive miscarriages, we were happy to have made it to our eight week and twelve week milestones with no complications.  After our twelve week ultrasound, genetic screening, and recommended testing came back normal, we were excited to finally tell Brody that he was going to be a big brother!  That being said, our lives would drastically change in just a few weeks...

We arrived at the Greater Baltimore Medical Center (GBMC) for our highly anticipated anomaly scan at 18 weeks/5 days.  This is a detailed scan during which each part of the fetal anatomy is examined to see if the baby is developing normally.  As with every parent, we just wanted a healthy baby, but we were very curious to find out if the next Salkeld would be a boy or girl.  A baby boy meant we could finally go through the dozens of clothes bins stored in our garage that we had put away when Brody out-grew everything and a baby girl meant we could buy new things and also give Brody the baby sister he so desired.  We believe him wanting a baby sister came out of fear that he would have to share all of his toys with a baby brother.    

All was going well with the ultrasound and the sonographer had pointed out our baby's heartbeat and other parts of the body including the face, hands, fingers, legs, feet, etc.  It wasn't until she began looking at the baby in more detail that the room fell silent.  Being that we had had numerous ultrasounds in the past with the other pregnancies, we immediately feared something was wrong.  When she had completed the ultrasound, she had confirmed our thoughts and said she was worried about something.  She left the room and went over her findings with the doctor.  After what felt like an eternity, they returned and the doctor continued with the scan.  The doctor then invited us to her office and began explaining the results.  

It was then that our worst nightmare as parents came true and we were told that our baby BOY had what’s called a Congenital Diaphragmatic Hernia (CDH).  She explained that this occurs when a hole in the diaphragm muscle — the muscle that separates the chest from the abdomen — fails to close during prenatal development, and the contents from the abdomen (stomach, intestines and/or liver) migrate into the chest through this hole.  When the abdominal organs are in the chest, there is limited room for the lungs to grow, which prevents the lungs from developing normally.  This can cause reduced blood flow to the lungs as well as asthma, gastrointestinal reflux, feeding disorders and developmental delays.  About 1,600 babies are born with CDH every year in the U.S., or 1 in every 2,500 live births.  She told us we would have to see a doctor who specializes in birth defects and further stated that she believed our baby had a 50/50 chance of survival after birth. Although we had listened to everything she said, we didn’t truly understand the severalty of the situation as neither of us had ever heard of CDH.  We left GBMC that day faced with two options and what seemed like an impossible decision.  At some point we would have to decide between terminating or continuing with the pregnancy knowing that the outcome of our baby boy would be unknown until after birth.

The drive home from GBMC that day was unbearable as we began making the numerous calls to family members trying to explain what little we knew about our baby boy’s diagnosis.  When we finally arrived home, we received the biggest and best hug from the most spunky, crazy little four-year-old boy ever.  Even though we had just received the most devastating news, it was then that we remembered how incredibly lucky we were to already have a very healthy and active little boy, Brody. 

Later that night, I had a flashback from the previous weekend.  It was Tim’s birthday that Saturday and he had decided to take his best buddy fishing as they had done several times before.  A few hours after leaving, I received a picture of Brody completely drenched from head to toe and crying.  When they returned home, Tim explained that he must have told Brody a thousand times “If you fall in that water, you will never go fishing with me again…”.  For anyone that knows Brody, you know that he is completely obsessed with golf balls so of course instead of looking for fish in the water; he was using a stick to look for golf balls.  When Tim woke up that Sunday, he had planned to sneak out early for a peaceful morning of fishing.  Before he could make it out the door, Brody was up bright and early asking him what he had planned for the day and within moments, they were both off for another morning of fishing.  It’s times like those that remind us of how grateful we truly are for the little boy we have already been given….
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Brody captured after falling in the water while fishing with Tim on 5/10/2014....PRICELESS!!
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Caleb's CDH Story
Tim & Candice Salkeld
calebscdhstory@yahoo.com


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