This is my Great Granddaughter’s story written by her Mama Shawnie:
At my 20 week ultra sound I found out that my baby girl had kidney complications. They were not sure yet what the diagnosis was, but I was closely monitored with ultra sounds for the rest of my pregnancy. As time went on they told me that it looked as though there was a blockage and that if it didn’t clear up on its own there was a simple procedure that could be done. This at the time was extremely upsetting and scary… Little did I know it was so much more then that. Piper was born premature at 34 weeks on Sept.8 2014 at 9:08 am. After a drug free and uncomplicated labour, she was born not breathing and her skin had gone purple, her heart rate was dropping. She was taken away so quickly I didn’t even see her face. The doctors assured me she was okay but needed some help, I didn’t see her for 5 hours. When I finally saw her she was hooked up to a million cords and monitors, she was hooked up to a machine that breathed for her. I was told that one of her lungs collapsed. Her tummy was huge because of her kidneys that were so swollen full of fluid. She was born and going into acute kidney failure. Not exactly how you imagine having a baby. We were helicoptered to Children Hospital. A procedure was done where they inserted tubes out of her sides that drained her kidneys. She was then stable but struggled with breathing still. She was monitored for several days, getting constant blood work and numerous tests and ultra sounds. As if this wasn’t enough, a doctor came to me and said they were suspicious of an “underlying issue”. I was then aware that she wasn’t just a normal baby with a blocked kidney. Although Piper’s kidneys are her main problem, it is actually just part of a bigger picture. There was blood work taken and the genetics team investigated to see if they could come up with a diagnosis. Chromosome 7 was found to have a small section of DNA missing (a deletion). This data was entered into a data system to find information on children with a similar condition but nothing came up. Piper’s condition is unique to her meaning no one in the world has the same deletion. Because there is nothing to compare it to, we don’t know how this will effect her. I have been told she may be slower in school and may be behind to reach her milestones. She may have problems growing, she may always be small. This chromosome deletion gives an increased risk for seizures (which so far hasn’t been a problem). After finding this out, more things were discovered. The plates in her fore head prematurely fused together and will require surgery between 4-6 months to separate them and allow her head to grow normally.
There was an MRI done to see a clearer picture of Piper’s kidneys and also brain. Neither scans came back normal. The picture showed that her kidneys are fused together as one looking like a horse shoe, with many tubes going in all different directions that they can’t even tell if they are blocked or not. They are so abnormal the doctors aren’t sure that they can offer any permanent surgery that would fix her kidneys for good. It is still in discussion but they will most likely bring her kidney drainage to the skin and let them drain into her diaper. Children often have this for a number of years until they either have surgery or a transplant. In Piper’s case, we can’t think this far ahead because it is unclear what the next step would be. Apparently it is complicated enough on a relatively healthy baby, and even more so on a baby with any brain complications. The fact is that her kidneys are working right now, but they don’t know if they will continue to grow with her and continue to meet her needs as she gets bigger. This will be an obstacle we will tackle when we get there. We take everything one step at a time.
When I look at Piper, I don’t see any of these things. She doesn’t seem sick. She seems like a regular little baby. She is extremely loving, she is hilarious, she is smart. This has been an emotional roller coaster, and I have often wondered “why me”, always trying to make some kind of reason for all of this. But I believe that Piper was given to me as a gift, I feel lucky to have her. She has changed my life forever and changed me as a person. She’s made me realize what life is about and shown me what love is and what is really important. Its terrifying that Piper’s future is uncertain and there are so many things that could go wrong but if anything were to happen, I feel lucky to know her and to be able to spend every day with her. She is the most special and most beautiful little girl inside and out, and we needed each other. She is so loved and I think that everyones love and support does so much for her, more then any doctor can do. We hope to be home soon! There is an entire future of doctors and obstacles to face but we are so lucky to have so much support :
Shawnie, is incredibly strong. She is only 22 years old and has become the best advocate a wee baby could ever have!
Shawnie is staying at the Ronald McDonald House so she can spend every possible minute by Piper’s side. She has only been home for one day since our Pixie Piper was born. Her extended family and friends are doing everything possible to make this as bearable as possible, but you can help.
If you can donate, we have set up a donation website for Piper and her family. Their needs will be many, from travel costs to and from Vancouver, specialized care and education for Piper as she grows and just everyday bills to pay.
The donation website can be found here, every little bit helps.
If you have words of encouragement for Shawnie, or want to learn more about baby Piper, Mama has set up her own blog page here http://piperisabelle.wordpress.com/2014/10/19/pipers-story/#sthash.ZImEiPJx.dpuf
The love I feel for this little Pixie and her Mama and Papa is immense.. Please help in any way you can.
This story is about my Great Granddaughter Piper Isabelle Blinko. Her needs are many but so is the love that surrounds her. Her Mama Shawnie is living at Ronald McDonald House in Vancouver so she can be with her nearly every minute of every day. These are two of the most beautiful people you could ever hope to meet, two very special girls on planet earth whose presence makes our world a better place. If your heart feels moved to help donations are being gratefully accepted here http://piperisabelle.wordpress.com/2014/10/19/pipers-story/
At my 20 week ultra sound I found out that my baby girl had kidney complications. They were not sure yet what the diagnosis was, but I was closely monitored with ultra sounds for the rest of my pregnancy. As time went on they told me that it looked as though there was a blockage and that if it didn’t clear up on its own there was a simple procedure that could be done. This at the time was extremely upsetting and scary… Little did I know it was so much more then that. Piper was born premature at 34 weeks on Sept.8 2014 at 9:08 am. After a drug free and uncomplicated labour, she was born not breathing and her skin had gone purple, her heart rate was dropping. She was taken away so quickly I didn’t even see her face. The doctors…
View original post 769 more words