The Road Less Taken: A boy with CDH (Congenital Diaphragmatic Hernia)

Never would I imagine my life with a child with complication. This is not my first time talking about my second son here on Steemit, but because everyday is an opportunity of hope and improvement, there bound to be a story to tell. Years ago when I witnessed any couple with a child with condition, I told myself this;

How nice if I can predict the future, I will not want to be conceived if I know the child will have a complication. ~Jadeline

But now, after having Jansen, he has changed my entire belief system.

If I can predict the future and able to find out about Jansen's condition, I will still want to conceive and have him into my world. Because without him, I will not have known what is true love and true joy. I will never know a person with a scar is actually very strong despite the petite or weak stature. ~Jadeline

I am not the only mother who has a child with complication which requires more care and attention. There are many more like me, some have to go through even more complicated circumstances. Yet, to have a child with complication requires you to walk the road less taken.

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How it all started

3rd July 2014, Jansen was born into the world to fight for his life. And me, as his mother, prepared yet unprepared, also had to gear up for the fight. After giving birth, I did not get to see him as he needed to be immediately intubated to help him breathe.

The thing about CDH was everything looked perfectly normal on the outside but inside was in total mess. The hole at his right diaphragm enabled his liver, kidney, intestines and half stomach to go up into his right chest, pressing and hurting his right lung. Therefore, he did not have functioning right lung for his breathing.

He was given 50-50 chance of survival after his surgery to fix his diaphragmatic hernia. I was scared to death that that he would not survive the surgery as the team mentioned his heart might stop. I tried my very best not to tear but somehow the reservoir just opened up.

All I could do was to gaze at him and sent prayer daily that he would win the battle.

He survived the surgery at 6-day-old and now it was up to him whether his heart and lungs could fight or not. One-month-stay at ICU really tested my faith. I told myself not to give up as much as I see his spirit continued to fight. Everyday was a day between giving up hope or putting on faith. And gradually I learned the skill to not cry on the outside, but just bled on the inside.

This photo above was in fact the scariest moment we were in as he got infected by E.coli and his lungs collapsed so they sedated him 100% and gave him more help with the ventilation and put him to sleep on his belly to reduce tension on the lungs. They said he wasn't looking good. I was in pain most of the time whenever I thought I was going to lose him. Again, my tears were hidden deep within, I would not show it in front of Jansen in case he picked up the sad atmosphere. I wanted him to sense my positive vibes. Praise the Lord, he sailed through the hurdle and recovered from the infection, after a couple of ups and down, tests and CT-scan to curb the culprit.

Beating against the challenges

Just when we thought after the hernia surgery, he was on the journey of recovery, but no. Doctors found out Jansen had severe reflux as he kept vomiting milk after feed. With reluctance in our heart due to there was no other better way, we agreed to the procedure of fundoplication (tie up his stomach opening) and also gastrostomy (a hole in stomach for tube-feeding). Both surgeries would incur long-term complication on Jansen but we had to let it happen to reduce the risk of the reflux causing milk to enter his lungs or him got choke and affected his breathing.

Fresh wounds from this surgery.

The side effect of fundoplication was him not being able to release air out, meaning he could not burp like normal human do. Therefore, there would be immense discomfort after every feed. He would retch and gag. Up till today, Jansen had grown to live with the discomfort. I guess that is the power of human being, we adapt to survive. I see this in Jansen since he was an infant. He adapted, he evolved, he fused with his pain and suffering, and now he lives his life as though there is no pain, and all he shows is living his life to the fullest like any other children.

He also endured a degree of inconvenience having to be attached to his breathing machine 24/7. However, he got used to it; he walked and he ran and he slept with this companion.

Breathing machine was his 24/7 companion.

Another thing was we, as the parents, endured the greatest pain in the form of love, to perform suction on him twice a day, where we inserted tiny tube into both his nostrils right into the chest, followed by inserting the same tube into his mouth, also right into the chest area, to suck out all the mucous and phlegm as his lungs, being small in size were incapable to expel the mucous out.

Apart from the above, he lost his ability or he forgot how to swallow so he consistently drooled. Therefore he wore his bib up till 2 years old, and people always thought he was still 1 year old judging from his size and him still wobbly when he walked. And the bib. Lol.

He drooled non-stop. Therefore we changed his bib every 2-3 hourly. We had around 20 plus bibs in his wardrobe.

As parents, we were proud to see him brace through all challenges with courage and joy. Sometimes, I see him as superhero, having tiny right lung but fighting big CDH battle. Other times, I see him simply as a bubbly normal boy. However, no matter how hard I try, the worry about him getting infection is still stalking me.

Miracles from birth till now

Despite all the challenges, we are blessed to witness miracles in his life. The hole in his heart miraculously closed up at 4 months old, just before we discharged from hospital and Jansen got to go home for the very 1st time.

At 8 months old, after echocardiogram, doctors confirmed his pulmonary hypertension was minimal and close to zero so they stopped his heart medication called sildenafil. We were beyond grateful because taking sildenafil for long term would cause alot of side effects to one's body.

At around 1 year old, doctors by faith stopped his reflux medication (omeprazole) due to its side effect. He had been taking the highest dose and if continue to take beyond 1 year old, it might spoil his stomach. Gradually he was able to cope with his reflux more plus we tried to cut down whatever food that worsen reflux. Later on, we did a test on him and it showed no sign of reflux. Yay! (Although he still gagged after every tube-feed).

Also around 1 year old, he finally could laugh with laughter sound. Before that, he never laughed out loud and this concerned our physiotherapist, wondering was there an impairment in the brain which caused this inability to laugh?

Prior to alot of medicines, steroids and sedative medicines injected into his tiny body since born, coupled with heavily intubated at ICU, we were told there was a possibility of him being underdeveloped in other areas like social and physical development. However, Jansen amazed us when he finally took his 1st step at 18 months old. It was our greatest Christmas present ever! And soon we noticed he loved to talk too! Although he is small and petite for his age.

At about 2 years old, he gradually learned to swallow his saliva and drooled lesser. Mummy was happy because I did not need to wash 8-12 bibs a day. lol. We were also given the green light to slowly wean him off his breathing machine. We were happy to get to see him without his mask for more and more hours in the day. Wouldn't want him to be like another version of Darth Vader (you see, his breathing machine gave out breathing sound like that of Darth Vader!)

Yay, we get to see his face without mask more often.

At 3 years old, after hospital admission for one night for breathing monitoring, he was given the 'license' to be off his bi-PAP (breathing machine) entirely and hopefully his already-underdeveloped right lung would not collapse. Up till today it does not. Praise the Lord! He is also 100% potty-trained at 3 years old.

At 3 years and 5 years old until now at 3 years and 7 months old, we attempted to wean him off his tube-feed to teach him to eat on his own. It was a tough journey and he lost alot of weight. But we see his determination to learn to chew and swallow. And we flow with him not to give up, unless he himself tells us that he feels uncomfortable to eat and asks for tube-feed. Of 5 tube-feeds in the day, one of them we will ask him to eat. At night when he sleeps, we top up some calories via tube-feed.

Learning to eat. Chew and swallow Jansen.

He still has a journey to go but we are so proud of him for his achievement as of today.

To reward him, during this festive CNY season, we brought him out to the mall to expose him a little. Usually we are not encouraged to do so but are advised to keep him away from crowd as his lungs cannot cope any of the respiratory bug (flu and cough) which might land him in ICU again. We, just for once, throw our fear out of the window, use some grace and faith, and for the very first time bring him out for family reunion lunch and dinner, a walk to nearby mall and a visit to Big Hug (daddy's restaurant).

Finally, this year, we get to go out more often as a family. Just that wherever we go, mummy keeps wipe this and that, sanitise and disinfect everywhere. lol.

Brought him to nearby mall for lunch. I love complete family photo.

With @danielwong, @happycrazycon and their lovely son, Jansen's cute cousin.

First time ride on walkalator. He was nervous.

He finds mannequins interesting, he must grab hold of them. Lol.

Cheers to our lovely friend @josephinengpy who just got married today.

Few days ago, we also brought him to Big Hug. See how happy he is.

We are positive he is heading the correct direction and more good news about Jansen on the way. Last but not least, a cheeky smile from our dear little fighter Jansen to you all Steemians.

Our CDH survivor champion. Now can talk, run, jump, fight like Power Rangers, and continue to learn many new things. We are proud of him.

Recently, we have established a tag line, "Hope Jansen can eat more, and you do not need the feeding button anymore." And Jansen says, "YESSS!"

Hope you don't get bored by my long story and thank you for reading my story of the year about Jansen. Thank you @danieldoughty for hosting this for us.

With 💗, @iamjadeline

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