Guest blogger Manda T writes of her son Solomon's Story with Congenital Diaphragmatic Hernia (CDH). See bottom of blog for a definition of CDH.
When my son was born he wasn't that lovely shade of pink. He was grey. He didn't cry. He was lifeless. And the birth suite was so quiet, you could hear a pin drop. He was born on 23rd June 2014 with Congenital Diaphragmatic Hernia (CDH).
Finding out at our 20 week anatomy scan was a huge shock. Solomon was our 4th baby. Our previous three, all girls, were born perfectly healthy. To this day, I'm convinced his condition is my fault. Mothers guilt is an awful thing.
An hour after Solomon was born
Glenn's daughters meeting Solomon when we were told he was on maximum support
The morning after Solomon was born his Dr stopped us in the corridor to his bed. The words "end of the line" and "maximum support" are all I can remember. Or choose to remember from that conversation. He was on the high frequency oscillator, nitric and many different medications. He didn't respond well to being touched. Cares sent him into a tizzy. The numbers went down and up, up and down. Days passed. He was no closer to being transferred for surgery. My husband and I stayed in the parents room in the NICU. Only the parents of the sickest babies stay there.
On day 7 his doctor took a chance and switched him to the conventional ventilator and it worked! Day 8 saw him be transferred to the children's hospital. Day 10 he had his repair. 7 or so hours went by so slowly. I caught up on sleep. My husband paced the room. Thankfully all went well. His hole was so large it required a patch to close.
The rest of our journey seems like a blur. Though at the time I just couldn't wait to have our son home. He fought so so hard to be here and stay. He is my absolute hero.
Solomon was 16 days old when he started on tube feeds.
He was 17 days old when they switched him from the conventional ventilator to CPAP. That was also the first time we heard him cry.
At 18 days old, we had our first cuddles.
After 22 days, Solomon was switched to hi flow oxygen
On day 25, Solomon was transferred back to the hospital he was born at. On the way, the transfer team stopped in the corridor so he could meet his sisters for the first time.
Being transferred to PMH
Solomon after surgery
Cuddles with Mum
Cuddles with Dad
Day 29 saw Solomon taken off all breathing support. For the first time in his life, he was breathing unassisted.
One tube to go!
The days following were filled with trying to get him to take full bottle feeds. Easier said than done. Solomon had severe reflux and would vomit at every feed. Eventually medication helped. He started gaining weight and taking full feeds.
On August 15th 2014, day 53, my 31st birthday, Solomon came home. He will forever be the best birthday present I will ever receive.
In two weeks Solomon will be celebrating his first birthday. I don't know how I'm going to handle that. Feelings have a funny way of creeping up on you. I have days where I feel fantastic and days where I want to crawl into a ball and cry. I still wonder why me? Why us? Why our baby?
First family photo - Image Credit: Samantha May Photography
Once you're the parent of a CDH baby, your life is never the same. You watch your baby fight for their lives. Literally. While the scar my son bears shows the hell he's been through, I have no physical scars from my CDH journey. Though my emotional scars are cut just as deep. You cannot go through this experience unscathed. And you won't come out the other side the same. But with the love and support from our CDH Australia family, I know I'm not alone. And that makes it just that little bit better.
Definition of CDH - Source: CDH Australia
The diaphragm is a muscle that helps us to breathe and separates the chest cavity from the abdominal cavity. It develops in early foetal life. Congenital diaphragmatic hernia is the absence of the diaphragm or, more commonly, the presence of a defect in the diaphragm. It can occur on either the left or the right side but is most common on the left (80%).
As there is a defect in the diaphragm, the abdominal contents including the stomach, intestine, liver and spleen can be displaced into the chest cavity. CDH is usually an isolated condition, although other congenital anomalies, most commonly cardiac, may be associated and influence the prognosis.
Since these organs are in the chest cavity and not where they are supposed to be, the lungs have insufficient space to grow normally and are therefore smaller than they should be. The determinants of survival include the degree of underdevelopment/undergrowth of the lung and the supplying blood vessels with associated pulmonary hypertension, as well as the gestation of the baby.