Bryson’s Story - Congenital Diaphragmatic Hernia (CDH)
Bryson’s story starts long before his Congenital Diaphragmatic Hernia (CDH) diagnosis or even his birth. My husband and I struggled to get pregnant and turned to IVF. After two failed egg retrievals, with a bit of magical science help, I finally produced enough eggs to work with. Bryson is an ICSY/IVF baby. He is quite literally made by science. They implanted two eggs and Bryson stuck.
The significant part about getting pregnant this way is seeing and learning every detail of your body and pregnancy. It was super special and created an instant bond. My pregnancy was actually almost textbook. Although because I was over 40 and considered high risk, I received every test imaginable and to find out I have had exposure to just about every known virus. This was a good thing as I passed valuable antibodies to my baby. I had an office visit every other week for the first ten weeks, then “graduated” out of IVF and began to see my OB once a month. My husband was born with a congenital heart defect and needed life-saving surgery at two days old and IVF babies can often have heart defects.
For this reason, I pushed for a fetal echocardiogram. The baby passed with flying colors. At 13 weeks, we found out through a blood test that our baby would be a boy!! I instantly cried, I wanted a boy and the test made it feel more real - I was really pregnant! At our 20 week scan, the silly baby was bottom-up and we got a good look at his kidneys and one foot. I went back at 22 weeks and all seemed well. At 30 weeks, I was seen weekly for nonstress tests. Although Bryson was healthy, he often did not “perform” the way they liked and I always ended with an ultrasound. At 34 weeks, I was being seen twice a week. Again, it always ended in ultrasound and it always looked just fine. No one ever saw anything. No CDH was ever discovered and my only symptom was polyhydramnios. I was so big and in so much pain.
I was finally called into L&D in Salem, NH for an induction at 39 weeks and 5 days on December 20, 2018. I progressed nicely and started hard labor around 6 pm on December 21. An epidural was placed and I was comfortable. By 10:30 pm, I began to feel all the pain again and at 11 pm we realized my epidural line had disconnected near the bag and I was not receiving any medicine. After almost an hour, it was reconnected, but it was too late and I never numbed again. For 3 hours, I pushed and pushed and tried every position to get his head out from under my pelvic bone.
At 3:12 am on December 22, 2018, my perfect miracle solstice baby was born! I asked for delayed cord clamping until the cord had stopped pulsing. Bryson was laid on my chest and all he did was squeak. The tiniest little mouse squeak. I instantly said, “what’s wrong with him?” Their response was, “he’s tired, give him a minute.” More squeaks and now my baby was turning purple. I shrieked! “He’s purple!! Why is he purple??” At this point, I heard the doctor tell my husband, “you need to cut the cord now!”
Suddenly, doctors and nurses rush in and place my baby on the little isolette in the room. A nurse lifted his arm and it dropped limply to the table. I thought we lost him right there. They immediately took him to the NICU. I told my husband to stay with the baby and I delivered my placenta alone with my doctor. I was so scared and exhausted. I finally fell asleep and they woke me at 5 am to go to see him. He was on a little bed with tubes everywhere. When we toured the hospital, we were told they were a level 2 ICU unit. When our son lay struggling to breathe and lifeless on their little bed, we were told they were not equipped to even intubate. We were angry and frustrated. They then told us a hospital in Manchester, NH would transport him to their facility for treatment of what they thought was an infected lung. When the Manchester transport team arrived, they requested a second chest X-ray and found the LCDH. It was then decided that Bryson would be transferred to Boston Children's. I was told I would see him before they took him. However, they loaded him and left without bringing me to see him. I was terrified I would never see him again. I was finally released Sunday at 10 am and my mom drove me to Boston.
My husband and I had never heard of congenital diaphragmatic hernia before and no one in our family had ever heard of it either. If you google it, you can get some scary results. We were all terrified and worried. No matter how much you try to prepare your mind, there is no way to prepare your heart for seeing your brand new miracle covered in wires. I could not stop crying.
I instantly fell in love with the MED/SURG ICU nurses. They are seriously angels in human form. The patience and love they have for their patients are immeasurable. I slept two nights on a cold, drafty window seat next to my son's equipment. I vowed I would never leave him. I was alone in his cubicle at 11 pm on December 23 when the anesthesiologist came to explain the procedure to me. She held me as I wept because I was so fearful my son would pass away during his operation. I had no idea what to expect or what to think.
They unhooked all his machines and wheeled our son down the hall at 7 am on December 24th, Christmas Eve. I will never forget my husband, mother and I sat in a restaurant next to the hospital, tears on our cheeks, trying to eat and not think about what was going on. After 2 hours, we finally got the call, our most incredible Christmas gift, “he’s ok! He’s good, you can come back and we’ll wheel him back in.” He came back so peaceful and slept through the day. That night was the only night I ever slept away from my baby, although since I was pumping every three hours, I was not getting much sleep anyway and was right back in Boston early Christmas Day. After that, I slept on the lovely hospital pull-out chair bed.
From then on, he fought like the Tiny Hero and CDH warrior he is!! As every hour, every day passed, he reached another milestone. He was extubated on December 26 at four days old.
We were able to hold our son at four days old! At six days old, he moved from a MED/SURG ICU cubicle to a room with doors on the M/S ICU floor. At eight days old, he was moved to the regular pediatric inpatient floor. On day ten, he pulled his NG tube from his nose. Two nurses tried to place it, but were unsure if it was properly placed in his stomach, so they called for an X-ray. Radiology was backed up and he was sleeping, so they told me to go ahead and take a walk. I went to get a coffee and when I came back, Bryson wasn’t in his bed. I asked the front desk, she checked the back room and sure enough, my little man was hanging in the back with all the nurses! He had gotten hungry, so she gave him a bottle with 2oz and he drank it right up!! Everyone was very pleased with this, so in 2 hours we tried it again. Again Bryson ate it right up. And so, Bryson decided we were done with the NG tube! Bryson was discharged on the lowest settings for O2 on day 15! We brought our two-week-old baby home on January 5, 2019. He had some minor reflux issues in his first couple of months. His O2 was weaned to just nightly by two months and by five months, he was off altogether.
Today, our son will be 3 in December! He is a vibrant, active, happy little boy who loves life and having fun! His surgery was performed laparoscopically, leaving not even a trace of a belly scar and his only scar is on the back where they stitched the hold from the breathing tube. They believe his “little lefty lucky lung” to be about 3/4, if not more, the size of a healthy lung. The lower left lobe is still not developed and it may always be that way. But his lungs are as healthy as he is and his team has no reservations about his growth and development. Thank you for reading and learning about our son!
