story begins in August of 2000 when we began trying to have a baby again.
After losing our first child named Nathan to SMA type 1 in November of 1998
(you can see his story at www.our-sma-angels.com/Nathan ) we decided to try
again. After getting pregnant in September we waited until we could have the
prenatal test done before we told people we were again expecting. The only
people we told was my parents (Noni and Pappy) who were very excited. We
went for our prenatal test at 11 weeks pregnant. We decided to do the CVS
test because it was done earlier and we could find out the results earlier
and figure out how to live with SMA again and learn early how to care for an
SMA child long term.
We were very comfortable with the man who preformed the test and once the
test was done the waiting began. We waited, we waited, and we waited some
more. It was taking forever and after 5 weeks we finally got the results..we
were having a girl and NO SMA!!! We were thrilled and excited and began
sharing the good information with everyone and of course they were all
thrilled for us.
The pregnancy was an easy one, and I enjoyed each and every thing about it
knowing it would probably be my last one. I was thrilled when she began to
move around and noticed how much stronger her movements were than her
brothers were. As time grew closer I began getting Ultrasounds every week
because I had gestational diabetes and she would pass every test she was up
against with flying colors. We decided that at 38 weeks it was time to have
her because she looked so big...so off we went for our planned c-section.
She was born May 30, 2001 at 1:27 pm weighing 8lbs. and 11 1/2oz., and 18
1/2 inches long. She was perfect and was screaming, kicking, and MOVING when
she entered the world. She scored very high on both apgar tests and we were
thrilled with each thing she did.
She was a wonderful nurser and took to it right away, once she latched on
that was it...she had the strongest suck! We stayed in the hospital for 3
days and were sent home with Lily having Jaundice just like her
brother...that was only the beginning. We had to put her under the
bili-lights at home and I cried because it reminded me of Nathan but of
course we had a healthy child..SMA free.
As time we went on my mom and dad (Noni and Pappy) began to get concerned
with her lack of movement and voiced their concern to us at my 6 week check
up. We made an appointment with her Pediatrician for the next week to just
take a look and see. I was in total denial..after all the CVS test was 99%
accurate..how could something like this happen again? It just couldn't!
We went to the pediatrician the next week, she was 7 weeks old at the time.
He checked her reflexes..they were weak but she did have some but he wasn't
happy with them. Looking back I now know once again that I could see the
signs but didn't want to see them...Dr. Sampson wanted to take a blood test
to rule out SMA so that we could look at other things that could be wrong. I
think Dr. Sampson knew but didn't want to tell us. They took her back to
take her blood, I left the room because I just couldn't stand it, how was
this happening again? How could I deal with it? They got the blood (a
horrible thing for children with SMA) and we left the office holding my
baby..my sweet baby.
For a week we had so many different feelings and that week was horrible.
Finally the test came back..POSITIVE FOR SMA. We were crushed..all I could
remember is screaming at the top of my lungs to God "How could you do this
to us again? It just isn't fair!". How could the results be so different?
How can we lose another child to this disease?
After a week or two we began to get back on our feet, of course we were
still grieving but Lily still was here and needed us and so we pulled
ourselves together for her. I began to get online and ask for help from
other parents...and that is where we are now. I have slowly adjusted to life
with SMA that is different with my first child. We didn't have time to do
anything with him..and we didn't have the options then because we didn't
know. Now we have the upper hand..we found out early enough to begin the
preventative care needed to keep her here and healthy for a long time. After
many letters and emails from moms all over who shared their stories with me
of life with their children with SMA I began to adjust and realize that this
wasn't the ultimate death sentence that it was before. Doctors that told us
to just let our son go were not the last word on SMA. We were not going to
let her die...we decided to fight this!
We began to be proactive in Lily's care, getting her g-tube early, making
sure we had the machines we needed before she was in trouble and all of that
has proved to be lifesaving for Lily who is actually thriving and growing. I
am now a proud mother of a healthy and happy 5 year old who happens to have
SMA and our story is like others out there as well. I decided to update our
story because of how things have changed, when I first started out on this
journey with this precious little girl my thoughts were probably like so
many.....hoping for a cure! I know I am still hoping for a cure but that
hasn't dominated my world anymore, I want her to happy and healthy despite
SMA and so far we have been successful because Lily is one happy and healthy
kid! She amazes me each and everyday with what she can do and the fight she
has in her. Despite all her obstacles she has grown into a beautiful, bossy
little girl who loves to take control of everything around her.
There have been so many changes since I began this journey with Lily and I
am sure there will be many more through the years but I am happy to be along
for the ride. Lily is the driving force and I am just happy to be her mom
through it all. Both of my children, Nathan and Lily, are the driving force
behind my life and has made me the person that I am today and I am deeply
grateful for that. Lily just keeps growing....and for that I am deeply
If you have a newly diagnosed child feel free to contact me if you have any
questions by using the button at the bottom of the page and I will be happy
to give you information, you can also visit other
here and for
more information about SMA please visit
Thank you for taking time to read our story.