My Baby Boy

Hello All,

I am from India and would like too share my experience.

My baby was diagnosed with left CDH in the 36th week of my wife's pregnancy where we had gone to do a routine growth scan.

My wife was due on 13th Feb 2013 and detection happened on 23rd Jan 2013.

The day we came to know lightning struck both of us,she was crying inconsolably at the sonologist's clinic while I was trying to gather as much information possible from the sonologist.

I did a research on the internet was and still worrying, about the prognosis of my baby.

I headed straight to the gynecologist and asked for details, she said your child will have to go a small operation and everything will be normal, I told her I was not looking at a survival I needed a healthy baby who would be like his Dad a adventure junky, life of friends,academically progressive and a thinking human being.She assured everything will be normal,but I was not convinced.

I would just like to add here that my sisters daughter had got meningitis when she was 8 weeks.She was in the NICU for nearly a month and the Doctors kept on promising each day and finally one day they said only time will tell what lies in the future.Unfortunately she survived,yes unfortunately because now she is 8 months and does no activity at all except for a spasm which gets when she gets out of her deep slumber. Docs and Neurologist have raised their hand they say nothing can be done. She stays with us while my sister and her other daughter stay with their in laws.Now you understand my situation?? I am a person with limited means of living and having 2 such kids was daunting me. But I wholly understood that I was standing on a one way path.

Back to our CDH story, later in the day I visited my friends sister who is a gynecologist but doesn't practice, she works in a medical consulting and research firm.She said now at this moment what you need is a good pediatric surgeon.She scrolled through her phone book and called a respected and known pediatric surgeon and narrated to him my situation.he told her that I should see him at his clinic next day at 4 pm.

On 24th Jan I was at his clinic at 2.30 pm with all the anxiety and apprehension in hovering around. I could feel the crunch in stomach as I had automatically quit food.I was waiting.The doc came in at around 5.15,he stuck in some operation.I showed him all the reports and he said in these cases the later the better.From the reports both lungs are visual and well developed and the child has good prognosis.I told him i am not looking at a survival and about my sisters daughter.I also made him aware about my financial situation.He agreed to operate at a government subsidized hospital where he was attached as a surgeon,luckily my wife was also to be delivered at the same hospital.He wrote a advice note to the gynecologist for a LS-CS and a ventilator.
After a emotional meeting with the surgeon i left his office my heart still pounding.

Next day morning i met the gynecologist and was told she would do a LS-CS when the ventilator was available, this being a government run hospital facilities are an issue.She said she will give a call.

I received her call the same day day to admit my wife on the 28th and on 29th she will do the LS-CS. The next 4 days went very tensed crying consoling each other.

On 29th at 1.30 pm my wife gave birth to a baby boy, The pediatric gave me glimpse of the baby for few seconds and rushed to the NICU. My wife came 2 hrs later from the labour ward.he was 2.96 Kg in weight.

A 2D echo was done immediately where PDA was found high.

I called up the surgeon and informed him about the situation he assured me that the doctors over their are capable and you need not worry he will come tomorrow and see my child.He was put on the ventilator on low setting at night around 1:00 am i was fairly happy that my baby did breathe on his own for nearly 11 hrs.

On 30th Jan the doctor who was going to operate told me that we need to stabilize the baby and make him fit for an operation first later we will operate.He responded well.In the evening one of the assistant told me that the baby is fine and can operate the very next day.He was on IV and was not fed.

People now I am tired of calling my baby "my baby or my child" from now on we will refer to him as "Fighter"

On 31st fighter was taken to the OT all conscious at around 2.30 and came out of the OT at 4.30 again very conscious with a doctor pumping some rubber ball next to him.That is what i saw of him from the day Fighter was in the NICU.
My wife was still coping up from her stitches in another ward on the same floor and was not able to walk upto the NICU. He was immediately put up on the ventilator.The surgeon met me and said it was a successful operation and you stop worrying about the child's future(Oh!!How and why would I stop worrying was a big question).

On 1st Feb morning I met the doctor again and he said your baby is fine and we would be stepping down the ventilator every few hours and observe him.They started lowering the intensity of the ventilator immediately, by evening 6.30 the ventilator was switched off completely. i was thrilled. He was still on O2 and IV but that was fine with me he was off the ventilator within just 27 hrs.

Now the next worry was to check if was suffering from GERD or any other symptoms. He was passing stools and urinating well all these days.My wife was now allowed to meet fighter but not me :(.

On Feb 2nd in the evening he was removed of the O2 IV still running nothing dramatic happened for the next 3 days worth mentioning he was just under observation.My wife used to to the NICU every two hours to check on him. He would sometimes cry,or look around at ceiling, equipment ,a shy smile sometimes and was asleep most of the times.

On 7th Feb the doc started feeding him with pedialyte mixed with saline water. IV was still running. Every 2 hrs they would inject 20 ml through a nasal cannula. He removed the nasal tube twice with his hands. Fighter is a menace the nurse playfully said ;) while she taped the tube over his lips :(.

On 8th Feb morning fighter was breast feeding all by his own,no IV, no medications at this moment.No throwing up,he burped after his feed.This continued through the day. Fighter's mother was overjoyed.

On 9th we got a discharge from the hospital with a followup note for coming Friday.

To is 13th Feb Fight kicks his feet in the air and is breastfeeding.

To all fellow parents and doctors would you please advise on my child's future, prognosis and upbringing.

I may have missed out some technical details and I am sorry for that.

Will keep you posted.

Sachin,

Your little boy's, "Fighter's", story is an amazing one. I can completely understand being afraid of raising 'another' special needs child. Please know that there is strong potential for your little fighter to live a totally normal life. My CDH'r did not come out of the NICU as quickly as yours did but today, at 18 months old she is advanced in her motor/development and language skills compared to any other child (though we do have bouts of asthma and frequent pneumonia that we need to be alert with).

Thank you for sharing your story.

Renee

Does coming out of the NICU quickly guarantees a child with good developmental an motor skills.

Sachin

First off Welcome!

My son was born 9/15/09 CDH showed up when he was 18 days old so into the NICU he went, it was the week end so surgery was put off until Monday (he was off of oxygen by Friday). He was in the hospital for 12 days after his repair. He would have been home much sooner but he got a bladder infection (minor thing) so the hospital would not release him until that was clear. He's now almost 3 1/2 years old Developmental he was somewhat delayed (he did not walk until 17 months) and he's behind in speech....however he's advanced in comprehension (understanding). He is currently in a preschool program and his school can not believe how much he knows (he knows all the alphabet both upper and lower case as well as all colors, right & left things like that and has for about a year now) especially for a child that does not talk much. He is just now really starting to talk.

Sachin, welcome to CHERUBS!! Figher's story and journey is a strong one, he is a warrior for sure! Thank you for sharing your journey with us, it will give other's hope....to never give up and find the right medical care, doctors willing to fight for your baby. I think coming out of the NICU quickly is a good sign of strength!!

My son was born back in 2004 and spent two months in the NICU. He was on ECMO, a lung and heart bypass machine, for a week. He turns 9 this year and is very smart!! Our first three years, he was behind developmentally and physically. He was a delayed crawler and didn't walk until he was 18 months old. We had him in therapy for speech and physical and finally he started talking about the age of 2 1/2. Now, he is caught up with his peers and you can't even tell he had a rough start. My son loves to learn and nothing will stop him from excelling at life. We do have asthma and abnormal blood flow back to the heart, but this is not stopping him from living a normal and very happy life. He is very adventurous and almost to the point of scaring me! He will try anything, not sure that is a good thing, but he does keep me busy.

Do keep us posted on your Fighter! Would love to hear more updates on him. We do have an India Representative, if you ever need more local support. Her name is Shankari Murali and she can be reached at shankarimurali@gmail.com. We love hearing from our international members.

Hope Fighter thrives at home!!

Thank you Nicole and Tracy,

Today I have an appointment with the doc for followups will keep you posted.

Welcome to Cherubs and thank you for sharing your story here Sachin.

Looking forward to hearing more about the progress your Fighter is making.

(I've mailed you my contact info. too)

Thanks Shankari.

Back from the doc,the wounds have healed,doc is more than confident.

That is great news Sachin!! Hope your Fighter keeps going strong!!

What an amazing story!!! We will keep good thoughts that Fighter continues to do well!

I used to work in a medical facility that took care of children & adults who had severe disabilities like your niece so I completely understand how big of a challenge this can be. There is no way to tell now how much long term disability your Fighter will have (if any) but I have the feeling he will have excellent support (because you have already shown that he does) and with your caring & support he will be able to achieve to his full potential, whatever that may be. Each of these children write their own story. He will write his as well.

Please continue to update us & I hope you have connected with your India rep.

Wishing you all many blessings!
Shelly Moore

wow x Wonderful news sweet hugs for you, your wife & your little fighter :) ty for sharing & we look forward to hearing all about him in future

What an amazing story! Thank you so much for sharing & welcome to CHERUBS. Keeping you all in my thoughts.