Isabella Grace Proctor is an "Amazing" gift from God.
Despite being alone and frightened upon hearing the news that her beautiful baby would be born with Downs Syndrome (trisomy 21), she fought against all odds and her "Amazing" baby girl arrived on July 2nd 2014.
Despite Isabella's health conditions she is just like any other little girl her age.
Isabella's Facebook Page:
An Interview With Cristy Proctor:
What is your name and age?
What is your daughter's name and age?
Isabella Grace Proctor
Almost 2, born July 2, 2014
Did you have a normal pregnancy or were there any complications?
High risk pregnancy due to being over 35. I also had extremely low levels of magnesium and potassium and required weekly infusions and was admitted every weekend for the last 2 months of my pregnancy.
When did you become aware that your unborn baby would be diagnosed with Down's Syndrome?
22 weeks of pregnancy
What was your initial reaction upon hearing this news?
I was very shocked, mainly due to the way I received the news.
I had went in for what was to be "routine" check-up.
The nurse called me back to check me in and do my vital signs.
She went on to tell me that during my last visit they had ordered several blood tests, one being a harmony test which had come back showing a 1:5 chance of my baby being born with Ds.
I asked her why this test had been done, as I had refused it.
She did not have an answer for me.
She went on to say that they were referring me to a high risk doctor for further testing and that they would have to get me in right away in case I wanted to terminate my pregnancy. Terminate????? Why???
I wasn't given any other information, just sent away with what may or may not be.
I was terrified.
I had no idea what DS was, nor had I ever met anyone with DS.
How was the diagnosis made?
I went to see a genetics counselor at the high risk doctors office.
They did an ultrasound and found markers on her heart as well as small leg bone growth.
I chose to have an amnio that day to confirm.
I knew, for me, I needed confirmation.
I'm a planner and needed to plan.
I wanted knowledge and that day I had none.
Just prior to the amnio, my friend grabbed my hand, and told the doctor "hold on, we are gonna pray".
And pray she did!
She asked God to show us his mighty hand at work, to use this unborn child as his servant, that no matter what the test showed that He was in control, that this child would be perfect in God's eyes. During the amnio, something miraculous happened.
We watched on the monitor as the doctor slowly began to insert the needle into my abdomen....and it happened...she reached right up and grabbed the needle and pulled really hard, not once, but twice!
My doctor was amazed.
He couldn't believe what he was seeing.
It was like she was saying "hey I am here, I know what is a head of me and I am ready!
I am a warrior!"
My doctor said he had never seen anything like it.
Your baby arrived 6 weeks early and spent 16 days in NICU, what was the process of her care there?
I had an emergency C-section because her heart was "non-reactive" on the monitor, which was concerning them. When she was born she was only 4 lbs 5 oz, but perfect in every sense.
They ordered genetic testing to confirm her diagnosis of DS.
While in NICU, she struggled to eat and required a nasal feeding tube until she learned to suck and swallow.
11 days after being discharged and while at home, your daughter suddenly stopped breathing but you gave her mouth-to-mouth, she was then air lifted to hospital, please explain in detail the Gtube and the Open Heart Surgery?
Izzy developed viral spinal meningitis and was in the PICU for 18 days.
She was able to go home for a few days only to be re-admitted again for heart failure.
Our goal was for her to get to at least 10 lbs prior to having OHS.
However, her heart could not keep up. Simple tasks of drinking a bottle would cause too much stress on her heart. Which is why we chose to have the gtube placed.
Unfortunately, we had no option but to move forward with surgery on September 22, 2014.
Her heart was too weak and could not wait any longer.
There are 3 types of Down's Syndrome
Which one is your daughter diagnosed with?
Isabella has Trisomy 21
Is Down's Syndrome hereditary?
Most cases of Down syndrome are not inherited.
When the condition is caused by trisomy 21, the chromosomal abnormality occurs as a random event during the formation of reproductive cells in a parent.
The abnormality usually occurs in egg cells, but it occasionally occurs in sperm cells.
An error in cell division called nondisjunction results in a reproductive cell with an abnormal number of chromosomes.
For example, an egg or sperm cell may gain an extra copy of chromosome 21.
If one of these atypical reproductive cells contributes to the genetic makeup of a child, the child will have an extra chromosome 21 in each of the body's cells.
People with translocation Down syndrome can inherit the condition from an unaffected parent.
The parent carries a rearrangement of genetic material between chromosome 21 and another chromosome.
This rearrangement is called a balanced translocation.
No genetic material is gained or lost in a balanced translocation, so these chromosomal changes usually do not cause any health problems.
However, as this translocation is passed to the next generation, it can become unbalanced.
People who inherit an unbalanced translocation involving chromosome 21 may have extra genetic material from chromosome 21, which causes Down syndrome.
Like trisomy 21, mosaic Down syndrome is not inherited.
It occurs as a random event during cell division early in fetal development.
As a result, some of the body's cells have the usual two copies of chromosome 21, and other cells have three copies of this chromosome.
Apart from your daughter falling into the category of approximately 47% of Down's Syndrome children who have a heart condition, does she have any other medical issues?
She has hypothyroidism, chronic lung disease, low muscle tone.
Does your daughter require a "special" type of paediatrician?
What is your daughter's prognosis for the future in regards to abilities and achievements?
I have to admit this question cut straight to the heart.
The definition of prognosis: the likely course of a disease or ailment.
The world's prognosis:
Down Syndrome Prognosis
Several factors affect a person's Down syndrome prognosis, including other medical conditions that can occur because of this developmental disability.
Now here is my take on it.
First and foremost, individuals with DS are all different just like everyone else. For myself or anyone else to put a "prognosis" on them, I feel would be limiting their capabilities.
Izzy has defied the odds over and over again.
Before even being born, she was facing a possible death sentence (however termination was never an option for me); meningitis; heart failure; lung disease. Countless times I wondered, "will I lose her".
So now, each day is a gift.
Each and every milestone met is a victory and the ones not met are goals and never defeat!
Do we have challenges? Of course, but so does every family raising a two year old.
Please explain in detail about the "angel in the photograph"?
On the anniversary of the DS diagnosis, I reposted about my experience and sharing her sonogram picture.
One of our followers pointed out that it looked like the face of an angel also in the picture.
I had never noticed it before and it really resonated with my spirit.
I felt as though God had been trying to show me something from that very first day that he was with us and that everything would be just fine.
Please keep in mind, I was going through this alone.
Izzy's birth father was no longer in the picture and all I had was my faith in God and in those early days of the diagnosis, I was desperate for any hope and full of mixed emotions...fear being my driving force, until my faith overpowered fear and God took over.
Please explain in detail about the Isabella 'Amazing' Grace - My Down Syndrome Journey Facebook page?
I remember being with Izzy in the PICU and one of her doctors came in and just started staring at her, not in a bad way. She then spoke up and apologized and said "I really don't know how to explain it, there is just something about her.
Every time I look at her, a sense of peace just completely fills me."
I felt as though God had extended so much of his amazing grace upon our life already that I needed to share that with others.
I wanted the world to see that life may have uncertainties but his grace is amazing and it is sufficient for us.
What advice would you give other new parents/guardians of a Down's Syndrome child?
Let your child be your guide.
Doctors and books and all the information in the world will never teach you the things your child will.
Remember your baby is a blessing, enjoy those early moments, they grow up so quickly!
Focus on the present.
Connect with other families that also have a child with DS.
Be your child's voice.
And of Course....
Welcome to Holland -
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy.
You buy a bunch of guidebooks and make wonderful plans.
The Michelangelo David.
The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of people you never would have met.
It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there.
And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
By Emily Perl Kingsley
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