Without further ado... here is Mackenzie's story:
While all kids are miracles in their own right, Mackenzie is extra special. In 2011, I suffered an ovarian cyst rupture caused by stage 4 endometriosis. I ended up losing my left ovary and fallopian tube. With a sparkle of hope, the following year we started the IVF process - I didn't even get past the initial tests. I had a large cyst on my remaining ovary and it was deemed unsafe for me to continue with IVF. While my heart was broken, we moved on with life and continued to enjoy our first miracle baby Jackson. With continuing pain, I began looking into options for a partial hysterectomy. In April 2013, just 2 weeks prior to an ultrasound to look at the status of my ovarian cyst, not feeling right (not to mention super late), I jokingly took a home pregnancy test and to my shock and awe it was positive. That ultrasound was quickly changed to a pregnancy dating ultrasound. Was this even for real?
My pregnancy with Mackenzie was somewhat uneventful (other than the fact I was of "Advanced Maternal Age"). She passed all of her tests. We were told she looked fine and healthy. Late in my pregnancy, around 31 weeks, I started to dilate and was put on bed rest until I reached the safer zone of 34 weeks. She was breach at one point and then just... crooked in my pelvis. At 36 weeks, I gave birth to my beautiful Mackenzie Marie. My labor was not without complications. She was still crooked in my pelvis and her umbilical cord was resting on her shoulder - every time I was moved to lay on my left side, she squished it and crashed and I started crashing with her. This happened multiple times. Suited up to prepare for a c-section, we took one last shot by giving me pitocin. This sped things up and Mackenzie started repositioning. After a 9 hour labor, Mackenzie was born at 8lbs 8oz and absolutely stunning. I was immediately in love with her.
As early as 6 weeks we noticed that her eyes looked different - one was bigger than the other. Our pediatrician referred us to a pediatric eye specialist who diagnosed her with myopia (near-sightedness) in her left eye. She would be wearing glasses for the rest of her life, but we needed to ensure that she was using her bad eye. We tried patching, blurring drops but she fought us hard. She uses her eye, but not without the help of her good eye. Today she wears her cute glasses full time.
At 6 months, I noticed a what seemed to be a large mass in her belly. We immediately had her looked at. An ultrasound and CT were scheduled to take a closer look. It turned out to be a benign lipoma. No reason for concern unless it becomes larger or painful.
By around 1 year, we noticed that Mackenzie was missing developmental milestones (of course some being a bit questionable, so we didn't want to jump to conclusions). She wasn't crawling or scooting although she would roll. She had no interest in pulling up to stand or jumping in a jumper. She didn't like to sit up and would usually fall over. We thought maybe hip dysplasia. An orthopedic specialist said her hips were fine but that she has right hemihypertrophy (one leg longer than the other).
In March 2015, we visited with a neurologist. Not immediately worried, but wanting to see progress, physical therapy was recommended. When she missed her 18 month walking goal, we were asked to schedule an MRI as well as an ABR and renal ultrasound. Because of illness and scheduling conflicts, this didn't happen until mid-September.
The results were not good. While there are a host of other things as part of her results, the main one being that she has hemimegalencephaly (an asymmetric enlargement of left cerebral hemisphere).
The main concerns around her disorder is developmental delay - for Mackenzie specifically relating to gross motor and speech as well as the risk of seizures (which she has not had to our knowledge).
Our next steps are to have a genetic workup and find out if she has a specific syndrome in which to attach her condition. This will provide us better treatment guidance.
All of this sounds super clinical, but I feel it is important talk about what a spitfire this child is. She has the sweetest personality and the most gorgeous smile (that I have often referred to as the answer to world peace). We absolutely love her to the moon and back.
Scared to death over this diagnosis is an understatement. Although, we are positive that with the power of positive energy, love and prayer that she will be a fighter. That she will defy the odds.
She is our miracle and uniquely made. There is nobody like her and that makes us love her even more.
She's got this.
