On July 15th, 2019, a new light in our world shone brightly! Baby Noah took his first breath at the Mount Sinai Hospital in Toronto, Canada. Baby Noah’s arrival into this world was anything but normal, his tiny lungs fought to provide the oxygen his organs so desperately needed. Baby Noah was born in the NICU of Mount Sinai, Canada and was then transferred to Sick Kids Hospital where he would stay for the next two months...
As he entered the third trimester, an unfavorable cyst was detected. It bore all the signs that could lead to a condition known as Congenital Pulmonary Airway Malfunction (CPAM), a relatively rare condition that affects about 1 in every 25,000 births. The first detection was made in our home country of Trinidad, a small island in the Caribbean. We were initially given a worst case scenario that our baby may not have made it or if he survived the pregnancy, he may have been born with complications to vital organs. All medical professionals on the island ensured us one thing; the road ahead would be challenging.
Unfortunately, the experience of medical professionals on the island for this condition was minimal and we found ourselves looking to other countries for professionals who not only had the experience in cases as ours, but also the equipment necessary for the post birth treatment.
Canada proved a viable option for us as we had family living there and we hoped this would at least help us offset some cost in lodging. After securing confirmation from Mount Sinai Hospital we prepared ourselves to leave Trinidad and knew that the road ahead would be a tedious one. We are not a wealthy family, I am an English teacher in a secondary school and my wife works part time at a restaurant. We are not frivolous in how we spend our earnings and we do our best to survive ensuring our kids are provided for.
Funding necessary for Noah’s initial treatment would prove to be our first challenge. We had enough in our savings to make the first crucial steps, securing our visas, airfare, accommodation and just enough for his pre-natal treatment and delivery in the NICU.
The doctors gave us one month, a time frame we were told to reasonably expect before Noah could leave the hospital to come home with us. Baby Noah’s complications proved to be more tricky than the doctors initially anticipated and Noah has passed two months at NICU, a devastating reality for us or any parent to endure. With medical bills estimated at $6,400 CAD a night (Noah has been in the NICU for over 60 nights and expected to stay for another month)
, we have exhausted our savings but would do it all over again for our little boy.
At the time of this writing Noah is just over 8 weeks old and has already had one major surgery and two minor surgeries. Because of Noah’s condition, a large cyst in his lung had caused his heart to be pushed to the far left. Two days after his birth, July 17th, a chest tube was inserted to suction air collecting in his chest cavity that was causing his heart to be pushed even further to the left. Two days after the insertion, doctors had to operate once more to adjust the depth of the tube as it was not relieving the air collecting in his chest cavity as it should. These two procedures were simple ones but that did not suppress our concerns.
On July 23rd, Baby Noah had a major surgery. As I write this, it is still impossible to convey the level of worry, fear, sadness and uncertainty we felt. The 5 hours spent while doctors operated on our little boy are to date the most excruciating we have ever had to endure and the emotions we were overcome with I would not wish on anyone.
The surgery was initially set to remove the upper portion of Noah’s right lung. During the surgery, doctors discovered the cyst that plagued his lung had grown and they had to remove his upper and middle right lung, leaving him with just a tiny portion of his lower right lung. In addition to this removal, they removed a tube initially inserted to relieve any air being collected in his chest cavity and the tube was replaced by a more robust and larger tube. This would aid in the drainage of any fluid collected post surgery and any accumulation of air. He also had a breathing tube inserted into his mouth which was attached to a ventilator to help ventilate his lungs with proper oxygen.
4 days after his major surgery, a chest x-ray revealed the collection of air once again in the area that was once his lung. Doctors at the NICU decided another tube needed to be inserted, leaving our precious little boy with two tubes coming out from his frail body. These tubes are connected to a suction system that enables air and fluid to be drained.
After 16 days of the surgery, it was decided that his breathing tube could be removed but still needed breathing support. He was then put onto CPAP therapy which helps to deliver constant and steady air pressure to the lungs.
The 4 weeks after the insertion of the second tube into Baby Noah’s chest would become an emotional roller coaster for us as the doctors would now be monitoring activity coming out the tubes. If they saw any bubbling that would be a sign that he was not healing as he should, no bubbles would be our best case scenario. The bubbles were infrequent and we finally got our relief.
Just as we thought it was all over and our little one was healing as he should have, the bubbling returned and persisted for another week, an anti-climatic ending to an otherwise promising month. At exactly one month post operation, the bubbling finally ceased. Doctors removed the tubes and have been trying to wean him off his CPAP machine, a machine that has assisted him in breathing since the surgery. After two attempts, Baby Noah has not tolerated this well. Once again we seemingly take two steps forward and one step back. Our resolve will not be broken because Noah has shown us true strength. We must be strong for him.
Baby Noah’s fight is one that has us in awe. How can a little baby go through so much and keep fighting? What a blessing of a child we have and for him there isn’t a thing we will not do or try our best to do for his survival and recovery. We do not know exactly why our little one had to endure everything he has, but we are convinced he is on this earth with us for a purpose. We will do all within our power as parents to help him find that purpose, making the necessary sacrifices as any responsible parent would.
It has been a very challenging experience that has left us emotionally and financially drained. I left Canada on August 24th to return to Trinidad so I may resume working. I left my wife and our precious little Noah at the same NICU he has called his home for the past two months and all I long for is to hold him without him being connected to a machine. All we long for is to have our little Noah come home, back in our country. Baby Noah's sister and brother keep asking me when will he come home. I tell them "soon".
We are of the firm belief that a little truly does go a long way. As you would suspect, the medical costs involved in Noah’s treatment to date have been astronomical, at least by our standards, and my wife and I set up this GoFundMe page to keep our family, friends and well wishers informed. Because we are not Canadian citizens as yet, we have selected my brother in law and Noah's uncle, Laurence Chin, a Canadian citizen, as our beneficiary and all funds raised here will be sent to an account in his name, which will then be used to cover all costs associated with Baby Noah’s surgeries and NICU care.
Any donation towards Baby Noah’s fight, regardless how small, is humbly and gratefully appreciated, and if you cannot donate, that’s ok, all we could ask is that you keep Baby Noah in your thoughts and prayers. Send him some love to give him even more strength on his road to recovery!