FIGHTING FOR LIFE.......RYAN'S LIFE
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Hello, my name is Devon Musser. I have two beautiful boys, one 15 years old and the other 18 months old. So when my husband and I found out we were going to have another baby right before our youngest turned one, we were both scared and overjoyed! All was well until our 20 week anatomy scan with Maternal Fetal Medicine(MFM). That day was the start of a long journey that will be filled with stress of all kind and heartache!
At our 20 week scan, we learned that our baby boy had a "tilted heart" where his heart was angled straight down instead of how the normal anatomy of the heart is in the body. The doctors did not know why the heart was tilted but were bound to figure it out. After several visits to MFM and an appointment with a cardiologist from the Children's Hospital of Philadelphia(CHOP), it was determined that our baby had a possible hernia. So the MFM doctors referred my husband and I to CHOP for further testing.
We had our first appointment with CHOP 4/26/17 where I underwent a series of tests. That afternoon my husband and I met with a team of doctors and counselors to discuss the results. That's when we learned that our precious baby boy, whom we decided to name Ryan Edward, had a Right sided Congenital Diaphragmatic hernia(Right CDH). They proceeded to tell us that his liver and intestine were herniated through the diaphragm which was the cause of the tilting of the heart. This hernia was also causing his lungs to be crushed against his ribs. The doctors told us that Ryan will need surgery after birth but will first be placed on a respirator for him to breath and given a nasogastric tube to feed him. We were given best case scenario which was that Ryan could be home in 3 - 6 months after birth but most likely he will be in the NICU for 6 months to one year if he survives birth then surgery. After hearing this news, we didn't know how to react or what to do next. We knew I was going to be followed closely by CHOP & MFM.
My next appointment was on 5/2/17 at 3pm with MFM in Lancaster. I went to my appointment thinking it would be a regular visit. Well that wasn't the case. During my appointment, the ultrasound tech saw that Ryan's head was down and it appeared my cervix was thin. They saw I was having contractions. The MFM doctor then escorted me over to the triage unit at Women & Babies Hospital to be closely monitored.
From triage, I was admitted to a room and was informed I was in pre-term labor. I was having 6-7 contractions every 10 minutes. After being given medication, the contractions decreased to 4-5 every 10 minutes and steady. At 11:30pm the doctor made the decision to get me transferred to CHOP. I arrived at CHOP at 2am on 5/3/17 with my husband already there waiting for me. I was then admitted to the Special Delivery Unit(SDU) and placed on monitors to watch Ryan's heartbeat and the frequency of the contractions. I had ultrasounds done and continued to be closely monitored throughout the day. We then met with one of the CHOP NICU doctors who explained Ryan's condition to us again and the plan after birth. We learned that not only was his liver and intestine herniated through the diaphragm, but his gallbladder was as well.
Survival rates of babies with CDH is 50/50 and with Ryan's being on the right, it makes it more difficult. His right lung currently at 31 weeks gestation is functioning at 20% where it should be more for his fetal age. This beautiful baby boy is a fighter inside and we are praying he fights once born! We have no idea on what our medical bills are going to be but with living between two households, our family home here in Lancaster and in Philadelphia for the next year or so, any amount is a blessing and will be greatly appreciated along with your prayers!
Thank you for reading our story and God bless you!
At our 20 week scan, we learned that our baby boy had a "tilted heart" where his heart was angled straight down instead of how the normal anatomy of the heart is in the body. The doctors did not know why the heart was tilted but were bound to figure it out. After several visits to MFM and an appointment with a cardiologist from the Children's Hospital of Philadelphia(CHOP), it was determined that our baby had a possible hernia. So the MFM doctors referred my husband and I to CHOP for further testing.
We had our first appointment with CHOP 4/26/17 where I underwent a series of tests. That afternoon my husband and I met with a team of doctors and counselors to discuss the results. That's when we learned that our precious baby boy, whom we decided to name Ryan Edward, had a Right sided Congenital Diaphragmatic hernia(Right CDH). They proceeded to tell us that his liver and intestine were herniated through the diaphragm which was the cause of the tilting of the heart. This hernia was also causing his lungs to be crushed against his ribs. The doctors told us that Ryan will need surgery after birth but will first be placed on a respirator for him to breath and given a nasogastric tube to feed him. We were given best case scenario which was that Ryan could be home in 3 - 6 months after birth but most likely he will be in the NICU for 6 months to one year if he survives birth then surgery. After hearing this news, we didn't know how to react or what to do next. We knew I was going to be followed closely by CHOP & MFM.
My next appointment was on 5/2/17 at 3pm with MFM in Lancaster. I went to my appointment thinking it would be a regular visit. Well that wasn't the case. During my appointment, the ultrasound tech saw that Ryan's head was down and it appeared my cervix was thin. They saw I was having contractions. The MFM doctor then escorted me over to the triage unit at Women & Babies Hospital to be closely monitored.
From triage, I was admitted to a room and was informed I was in pre-term labor. I was having 6-7 contractions every 10 minutes. After being given medication, the contractions decreased to 4-5 every 10 minutes and steady. At 11:30pm the doctor made the decision to get me transferred to CHOP. I arrived at CHOP at 2am on 5/3/17 with my husband already there waiting for me. I was then admitted to the Special Delivery Unit(SDU) and placed on monitors to watch Ryan's heartbeat and the frequency of the contractions. I had ultrasounds done and continued to be closely monitored throughout the day. We then met with one of the CHOP NICU doctors who explained Ryan's condition to us again and the plan after birth. We learned that not only was his liver and intestine herniated through the diaphragm, but his gallbladder was as well.
Survival rates of babies with CDH is 50/50 and with Ryan's being on the right, it makes it more difficult. His right lung currently at 31 weeks gestation is functioning at 20% where it should be more for his fetal age. This beautiful baby boy is a fighter inside and we are praying he fights once born! We have no idea on what our medical bills are going to be but with living between two households, our family home here in Lancaster and in Philadelphia for the next year or so, any amount is a blessing and will be greatly appreciated along with your prayers!
Thank you for reading our story and God bless you!
Organizer
Devon Forsythe Musser
Organizer
Lancaster, PA