Ohtahara Stories‎ > ‎

Abby Kielty's story


                                                                                              Abby 3 months old, before surgery

~Abigail Kielty~


When I was in my mommy’s tummy, daddy, and mommy knew something wasn’t right. Mommy had an ultrasound that showed I had a lot more fluid in the left ventricle of my brain then the right.

After mommy was instructed to have weekly ultrasounds and tests done, the Dr sent her to Abbott to meet with a neurosurgeon, because the Drs were convinced that I would need a shunt placed in my head after I was born.

On July 27th, 2010 I was welcomed to the world with loving arms. Mommy had to have something called a C-Section, I guess that’s where they cut open your stomach and take you out. (Ouch!!!)

The Drs looked me over and sent me to the regular Nursery! YAY for me!!!
Mommy, Daddy and I got to go home only 3 days after I was born.


On August 21st, we had a family reunion at our house. Mommy was holding me and I kept jerking my body. Mommy didn’t say anything to anyone because she didn’t want to overreact. That same evening when daddy was holding me, he noticed the same thing except, he did say something about me jerking my body.

Mommy and daddy decided that they would give it until morning and if it wasn’t better then they would bring me in.

Sunday morning August 22nd, I was doing the same thing, so mommy called Childrens in Minneapolis and asked them what they thought. They told mommy and daddy to bring me in RIGHT AWAY! So that is just what they did, and my journey began!

We went to Childrens and the Emergency Dr that saw me wasn’t sure what to think. She said it looked like reflux. After she called in a couple other nurses and Dr’s they hooked me up to a bunch of machines and sent me up to the PICU.

The Dr came in and said that they would like me to be monitored for 24 hours. The next morning they came in and hooked me up to something called a video EEG. They stuck a bunch of wires to my head and kept a video camera on me….. After monitoring me all day long, the Neurologist came in and said that I was having something called Infantile Spasms. He said the enlarged ventricle on the left side of my brain was called Hemimegalencephally (To shorten that up it means half of a big brain).

Mommy and daddy were told that they would try some medicines and that kiddos with this end up with some developmental delay. Mommy and daddy were NOT impressed by the neurologist that was sent in.

They were told to bring me in to the Neurologist and my pediatrician in 2 weeks for a follow up visit.


First mommy and daddy brought me to my pediatrician who is AWESOME! He referred mommy and daddy to a better pediatric neurologist down at St Paul Epilepsy group.

On September 9th, 2010 I had to go down to the Epilepsy group and have ANOTHER video EEG. I had to stay overnight yet again in the hospital.

Dr Frost was convinced that medicine was not going to help my infantile spasms but said he would add Keppra to the topomax that I was already taking and we would give it a few weeks. The Neurosurgeon also came in and met with mommy and daddy and explained this procedure called a Hemispherectomy. This means they would go in and completely disconnect my left (bad) side of the brain from my right (good) side of my brain. Wow did you know you could live with only ½ a brain????

After a couple weeks of this, my seizures were gone! I didn’t have a single seizure in 12 days!!! WOOOHOOO! Mommy and daddy and everyone else was soooo excited!!! But….. they returned

So my neurologist contacted mommy and told her that he met with the Neurosurgeon and they would like to go ahead with the Surgery. My surgery was schedule for Wed November 3rd. The Friday before that we went in for all my pre-op stuff and mommy and daddy were told that they rescheduled the surgery and it was for Monday November 1st. EEEKKKK mommy and daddy freaked out!


Monday came and it was very hard for my parents to hand me over to the surgeon at 7:30am, they both cried a lot!!!

They had a lot of family waiting up in the waiting room during my 11 hour long surgery! At 10pm the neurosurgeon went out to the waiting room and explained everything went great, and in a little bit mommy and daddy could see me….

At 10:30pm mommy and daddy came into the PICU and saw me for the first time as a new baby being SEIZURE FREE!!!
I was in the hospital until November 7th. Everyday I got better and better. I pulled out my own feeding tube, I pulled out my IV and I unwrapped part of my head wrap. I was sick of all those tubes in me, and this funny looking thing on my head! I was a STRONG little girl!


Abby's incision post op

Now it has been 3 months and I jibber jabber, I try to use my right hand as much as I can. I love to eat solids they are my favorite! I get lots of hugs and kisses and get all the attention in the world. I see an occupational therapist, a physical therapist and a speech therapist. I saw a vision therapist once and she didn’t feel the need that I had to continue at this time.

I see a therapist at Gillettes once every 6-8 weeks, and follow up with my neurologist every 12-16 weeks.

I may not learn on the same level as the other kids, but I can tell you one thing, I will try my best and with the love and support from everyone, Someday, I will be able to thank EVERYONE for their hopes and prayers because god has answered them!!!


Abby recent picture post op....doing great!!!

We just met the Kielty family in Iowa at the 2011 Midwest Regional Gathering and what a wonderful family.  Abby is adorable and very loved!!  Her older brother and sister just adore her and she really adores them too. Her favorite though is mommy!!  Here are some pictures...
                                                                                            The McDonald and Kielty Families
                                                                                                                Abby

                                                                                           Abby and her favorite person, Mommy


Comments

Follow us on Twitter

Picture of The Week