Sunday, 21 December 2014

Another diagnosis for our family :-(

I have always tried to limit how personal my posts have been for my children's privacy.  I also try to post pictures that aren't identifying as some of my children have safety issues with people from their past.  Today I am going against those ideas in the hope of bringing awareness to a health issue my youngest granddaughter was born with.  On Oct 30 my son and daughter in law gave birth to a beautiful daughter, Naomi.  Shortly after birth, like many infants she became jaundice however her jaundice did not go away with conventional treatments.  Quickly she was referred to liver specialists and many tests were done resulting in her being diagnosed with Billiary Atresia.  All of the testing and treatment is done at Children's hospital which requires a day of travelling to get there.

There is a temporary treatment for Billiary Atresia that can be done if the disease is caught before the child is 9 weeks old.  Fortunately for Naomi this was caught in time and she was able to have a surgery called the Kasai procedure.

Kasai Procedure

The Kasai procedure involves removing the blocked bile ducts and gallbladder and replacing them with a segment of your child's own small intestine. This segment of intestine is sewn to the liver and functions as a new extrahepatic bile duct system.
The operation is performed by a Pediatric Surgeon who has had special training in the management of surgically correctable problems in children. The surgeon may be able to operate through many small incisions (laparoscopic surgery) instead of one large (open surgery) incision. The surgeon will determine the safest method of operating and will discuss this with you before the procedure takes place. The operation will take approximately 4 hours to complete.

Naomi was not able to have a small incision and had an incision from one side of her little body to the other side, also her surgery took much longer to complete being in surgery for 6 hours.  After the surgery Naomi was in the hospital for 10 days and just recently returned home to continue healing.  Naomi will require being on medication for the rest of her life to reduce the risk of infection and help with the removal of the bile in her tiny body.  Unfortunately just 2 days ago Naomi broke out in a terrible rash which is felt to be an allergic reaction to the strong antibiotics she will require throughout her life.  Currently the physicians are looking at what options they now have.  It will not be know how successful the surgery was for 3 months, however the surgery, no matter how successful is not the end of the treatment.  This surgery just buys time before a liver transplant is required.

Naomi is the first child for my son Curtis and his wife Meredith.  This diagnosis has been extremely hard on both of them both emotionally and financially.  Meredith is currently on maternity leave however it appears she will need to become a stay at home Mom to support Naomi with her tremendous needs.  Curtis has had to take extensive time off work during the critical times of Naomi's life.  The costs of travelling and staying near children's hospital are adding up and it appears they will be spending a lot of Naomi's life going back and forth.  When in comes time for a liver transplant they will need to relocate for months to another province where the transplant is performed.  Recently we were informed if they can not financially afford to relocate and survive, their daughter will not be put on a transplant list.  
As a family we are looking for all the support anyone is able to offer, we have started fund raising including an online crowd funding option (on the side bar of this blog).  I am asking anyone that is able to please share our crowd funding page or make a donation if you are able.  All prayers for my granddaughter, son and daughter in law are also greatly appreciated.  


  1. Hang in there!!! Hopefully all goes well.

  2. Hello,
    I'm wishing you and your family the very best, I know little Naomi will beat this. Keep positive.
    All the best~

  3. Wishing all the best to your family. :) Naomi will get through this!
    All the best.

  4. I saw this post on another blog. I hope that Naomi gets the care that she needs. Wishing you and your family the best.

  5. Wishing you all the best, really hope things work out. xx