|
 Hi,
I am Bridgette’s Mom. I was asked to speak about
my experiences with Down syndrome and the life of our daughter
Bridgette who is now 27 months old. I struggled to try to
include everything that we have been through in the last 27 months
and limit my speech to just 5 minutes. It has been quite
a wild ride to say the least.
I
would like to start by saying, most other mothers I talk to about
the birth of their child experience much difficulty to conjure
up the memories of that day, as it is simply too painful. I am
happy to share with you my experience, which although was very
difficult, was also the beginning of a very beautiful journey.
The
Birth:
Bridgette
was born on a Friday in early 2005. She was a healthy, full-term
baby, 7 pounds 12 ounces, breastfed. She was perfect except for
a little gurgle in her breathing.
Two Hours Later:
Two
hours had passed since the nurses whisked Bridgette away for
her ‘bath’.
Longing to hold my new baby girl, I called the NICU and asked about
Bridgette. The nurse’s response was shocking: “I
am sorry, but I am not qualified to talk to you about the condition
of your baby.” And she hung up. I was floored. Was
Bridgette dead? Was she sick? What did this mean?
I
ran down the hallway towards the NICU when our pediatrician and
my husband rounded the corner. [Our pediatrician] smiled as he
came towards me. “Congratulations on the birth of your
beautiful baby girl!” he said. The racing in my heart started
to calm and I asked, “Is she all right?” “Let’s
go to your room, sit down, and talk,” he said.
The Diagnosis:
[Our
pediatrician] calmed my fears and shared with us the truth about Bridgette. He
informed us about her medical conditions, the holes in her heart,
the murmur, and that Bridgette had Down syndrome. I went
into shock, but his facial expressions, and his calm presence pulled
me back as he said, “You both have been blessed with a wonderful
gift. God does not give these babies to just anyone. You
have been chosen, hand selected, and your life will be so much
more fulfilling, you just won’t believe it.” He
then shared that he had just been through the [health care provider]
training through MHDSA and was so excited that we were his first
patients. As I look back, I too am so very glad that we were
his first patients after he received the training, which planted
the seed of hope and positive attitudes that we live by today.
MHDSA:
I
knew nothing about Down syndrome. So [our pediatrician] hooked
me up with MHDSA and I received my visitation the next day. When
I met Jeanette and her two-year-old son, Tait, it was from that
moment on that I knew everything was going to be all right. Jeanette
had tons of information, and she seemed so calm and relaxed, like
she had been doing this for 30 years! And Tait, he was just
like my kids at two, exploring everything in my hospital room.
He was cute, funny, lovable, and my knight-in-shining-armor.
Amazing Healing:
Bridgette
came into our lives, healed relationships between my family members,
and pulled our family together. Her heart
healed miraculously on its own, but she had another problem. She
was diagnosed with Hirschsprungs Disease at 8 months old. I
had been helping her to stool everyday for 8 months, thinking this
was normal for Down syndrome. At an MHDSA support group meeting,
I discovered that this was not normal and we took Bridgette to
a specialist, who confirmed that she would need surgery. Then
the roller coaster began again.
Surgery
went well, but Bridgette went septic and ended up having seven
surgeries all together. We almost lost her multiple times, and
one day, when it was all too much, I called Jeanette and told
her I was ready to give up, ready to let go of Bridgette’s
little foot as she was being pulled back to heaven. I did
just that, I stopped fighting, and told God, if he wants his
littlest angel so badly, then I release her. Shortly after
that conversation, I received a telephone call from [the hospital]
and the nurse was telling me that Bridgette was suddenly making
a remarkable recovery, and that we could come and take her home
in a week! The lessons I have learned in
the last 27 months go beyond anything I can explain. I am
a different person since our youngest daughter arrived.
I want to thank MHDSA for the training you provided to our pediatrician.
Thank you for your intervention. I can only hope and pray that
training will be provided to all the nurses that simply "don’t
get it," to all the OB/GYN’s, and even midwives that
desperately need MHDSA to help educate them. Most of all,
I want to thank you for the support that you have given me and
my family, through the good times as well as the tough times. We
never have to walk this journey alone and have made lifelong friends
from day one.
Thank you. |
