Here's her story...
Anticipation
I
have always had this nervous, anxious, excited feeling when it is
ultrasound time. It is the first time to see our baby- the
little eyes, nose and mouth -the fingers and toes. I can hardly wait
to find out if it will be a boy or a girl. But of course, I’m
always nervous that the ultrasound will show something that is
unusual. With my first two pregnancies, I had those same
feelings. Fortunately, their little bodies were perfect. This
time, I was on my third pregnancy and I felt like I didn’t need to
worry anymore, that those feelings of something being wrong weren’t
necessary.
The
Ultra Sound
My
husband and I scheduled our appointment early that morning so we
could wake the girls when we returned from the ultrasound and share
with them the good news. I remember sitting in the chair as they did
the ultrasound. Already, this ultrasound was different than my
previous two. Two ultra sound techs were present. The one was a
rookie, and the other tech was there to observe her
work. Immediately, this ultrasound seemed longer than the others
and somewhat tedious. It began taking so long- I wanted to just ask
“Is everything okay? Are you finding everything you need?” But I
figured she was just new so it was taking longer.
Once
the ultrasound was complete and she had entered the necessary data,
the tech pointed to the anatomy- we were having our first boy! We
were so excited for this news!! Our first boy! I remember walking out
of there and being so happy. We went home and woke our girls up
and told them they were going to have a brother. They were so
excited!
The
phone call
A
few hours later I got a call from my OB. I wasn’t able to answer my
phone so he left me a message to call him. With my other two
previous pregnancies, usually the doctor didn’t call me for a few
days so I knew at that moment something must be wrong. My
husband was very positive and said maybe he just was able to look
earlier at the results this time because we scheduled our appointment
so early. I was hoping that this was the case. The doctor
explained that the ultrasound indicated that there may be some
abnormalities. They thought my son might have Spina Bifida. He
wanted us to go see a specialist tomorrow morning to get a
confirmation.
The
Diagnosis
Thinking
about the first ultrasound, I had some hope that it was wrong because
the girl was new and just maybe she had taken the image incorrectly.
I read all about what Spina Bifida was that night. I had heard
of it, but I really didn’t know what it was. As I started
reading all the things that might happen to our little boy, my eyes
filled with tears. We went to the specialist and had some more
ultrasounds done. It was confirmed that he did indeed have
Spina Bifida. The doctor sat with us in a room and reviewed
some medical books and other information with us. It was such
an overwhelming feeling, so much information- pages and pages filled
with things that may affect our son’s body.
At
first, all I could think of was why me, why do I have to go through
this? And then, my thoughts turned to my family. Will I be able
to be a good mom to a baby with special needs? Will I be able to
still be a good mom to all my children? Will I be able to provide
them all the individual time and attention that they each would need?
How will this affect our other kids? Will they be mad at their
brother because sometimes they might have to miss out on things? And
my thoughts turned to my husband. How was he dealing with all this?
Would he blame me? Would he blame himself? Would he be able to help
me raise this child? The next couple of days were so hard. It
was so hard to not cry every time I thought about our son. It was
hard not to cry every time we told somebody. I remember
thinking, “is this what it’s going to be like forever? Will I
always have these thoughts of sadness?” I felt like there was this
big dark black cloud weighing down on me ALL OF THE TIME. It
felt as though all the happiness had been sucked out of me and all
that was left was fear, doubt, and sadness. I was so worried that I
would feel like this forever. I hated that feeling. I wanted it to go
away more than anything. I just wanted to feel happy again.
After about two weeks of feeling this way, things really started to
change. I think the shock of everything had worn off and the weight
of it all was passing.
Our
Decision
We had been
told about a surgery that they do for babies with Spina Bifida. The
procedure entailed surgery on me to get access to the baby. At which
point, they would repair the baby’s spine while he was still
inside of me. It’s a difficult procedure for both the mother
and the baby. They have to perform the procedure before 26
weeks so we were on a time crunch if we were going to do it. I
had to have some tests done to make sure we qualified for the
surgery. And finally some good news- we qualified! We started
to put a plan in motion. There was so much to consider… so many
details. There are only 4 hospitals in the US that perform this kind
of surgery. Luckily, we were close to California so we started to
make plans to go there. However, I would have to leave our two
young daughters for at least 2 weeks for the surgery in California.
After the surgery, I would be on bed rest until the baby came. The
effects of the surgery would most likely result in the baby coming
early. Most babies that have had this fetal surgery were delivered at
32-34 weeks. So, I would be on bed rest up In Salt Lake City,
four hours away from my home until the baby was born. And then,
we would have to wait to take our baby home when he was fully
recovered. So, I could possibly be away from my home for 3-4 months!!
A
Change of Plans
I felt like things were working out and then our plans began to
unravel. We were now going to have to go to Texas and have the
surgery. Thankfully, we had some family down there that we could
stay with which made things easier. The hospital in Texas told
us that they would do the surgery but that I wouldn’t be able to
come home until after the baby was born. This was going to be most
difficult. This would mean for 3-4 months away from my husband and
daughters? Who would take care of my daughters? So much doubt
started to fill my mind. I had felt so certain, but now doubts began
to fill my mind. With all the doubt, I kept planning for this
trip. I kept telling myself I was just worried about my kids I was
just being a “mom” and didn’t want to leave them. Part of
that was true, I didn’t want to leave them. I haven’t ever really
been away from them. Part of me didn’t want to do this
surgery. I didn’t want to have to go through everything they were
going to do to me. But, the other part of me would do anything
for our son in order for him to have the chance at a normal life.
I would ask my husband daily, “do you still feel good about doing
this surgery.” He would always reply, “Yes, everything will be
okay.” His faith always comforted me and made me feel like we were
doing the right thing. However, just days before we were
leaving, I had a total emotional breakdown.
What
now?
I
just didn’t think I could go through with it. I didn’t think I
could leave our daughters. I was so worried about them and plain and
simple, I just didn’t have a good feeling I asked my husband
to give me a Priesthood blessing that night to help me calm
down. After the blessing, I felt peace come over me. I felt
like everything was going to be okay. We were leaving in few
days and I felt like I was able to get everything done that I needed
to do and get ready to go. The night before we were leaving, a
bad feeling came over me. I told my husband that I just couldn’t
go. I felt like I was choosing between our children. I felt like if
I did the surgery, I was choosing our son over our daughters and if I
didn’t do the surgery, I was choosing our girls over our son. How
could I make a choice like this? I was so worried that I was going to
make the wrong decision. My husband and I knelt down together
and said a prayer. We both felt like we shouldn’t go through
with this surgery.
Faith
For two hours we sat and talked and cried trying to figure out what
we should do. While I was always the one with doubts about the
surgery, now my husband felt like me. We were both having doubts. He
didn’t feel surgery was the best choice either. I just kept asking
him, “are you sure, are you SURE?” I must have driven him crazy.
Gratefully, my husband is truly amazing and I couldn’t have gotten
through this alone. He was always there comforting me when I
needed it and helped us make the right and best decision for everyone
in our family. After finally deciding not to go do the surgery,
we went to sleep. I woke up the next morning expecting to feel
differently, that perhaps maybe I had just needed a good cry. But for
the first time in four weeks, I finally felt at peace! Peace for our
son. I knew that he was going to be fine and that Heavenly Father had
a plan for him. And maybe I didn’t fully understand that plan.
But Heavenly Father knew what was best for him and for whatever
reason we weren’t supposed to do that surgery.
I
began to understand… sometimes when a trial comes you first think,
“how do I fix this? How do I change it?” But sometimes I don’t
think that’s Heavenly Fathers plan. We are not meant to fix or
change things but to learn to adapt and accept things.
Here
he Comes
A
few months later, I had to leave my husband and our 3 year old
daughter. I went to stay with my mother -in law with our one
year old daughter until the baby came. The doctors wanted me close
in case the baby came early. This was hard to be away from my
husband and daughter for 2 ½ weeks but the time went fast. My
mother-in- law was great. She always had something for us to do to
keep us busy.
The
night we went into the hospital, I was so nervous. I had only met
with my doctor two times. I was delivering in a place that was
unfamiliar, and the doctor was going to induce labor which made me
so nervous! Fortunately, I did not have to have a c-section.
However, the labor was very hard on my body. It was by far the most
painful thing I have ever been through. I asked my husband to give me
a blessing while I was in labor because I was in so much pain and
just really needed this baby to come out. He gave me a blessing
and he since then has told me that, that was the most powerful
blessing he had ever given. He said he could just feel the power of
the priesthood in his hands as they were laid on my head. He said he
had never prayed so hard.
His Arrival
Several
hours later, our baby boy was born. We named him Carter.
Immediately after birth, they took him through a little door in the
room to take care of his needs. I didn’t get to even see our son
for 4 hours!! Before they transported him to Primary Children’s
Hospital, they brought him by my room and I got to look at him and
touch his little hands and arms. He was so happy. Because
my labor went longer than expected, he couldn’t have his surgery
until the next morning. So for 24 hours, I didn’t get hold
him. The surgery was three hours long. The procedure involved
closing up his back and correcting his spine.
Carter
Colt Forsyth
A
lot of people ask me if I was nervous while he was in surgery, and
honestly I wasn’t ever scared or nervous for him. I knew that this
surgery was saving his life and that everything was going to be
okay. He did great. Our son is such a fighter and is so strong.
He recovered so well. We were able to take him home five days
after his birth. He is such a miracle- 90% of Spina Bifida kids
have hydrocephalus. This is where the spinal fluid doesn’t flow
properly through their bodies and builds up on the brain. If not
treated, it will cause death. The whole reason we were going to
have the surgery while he was in the womb was to prevent this
condition.
Our
son has been blessed with not having hydrocephalus. He has some
bladder and bowel issues that all kids have, but he will always
have. I have to catheterize him twice a day and he is on Mira
lax to help him poop (quite normal). He was also born with clubbed
feet. We had to cast him for 2 months and then do surgery on his feet
to fully correct them. He had to wear braces on his feet day
and night for 3 months and now he wears them just at night until he
is 4 years old. When he was born, his legs and hips were really tight
and he couldn’t make them go flat. We had to do a lot of physical
therapy to help his hips get to where they are now. He still
has physical therapy about twice a month. Most of this is just
to make sure he doesn’t fall behind. He does really well with
everything that I have to help him with. Carter’s level
is L4 which is really low on the Spina Bifida scale. He is
able to feel and move everything but his feet. But despite
everything that we went through, I would not change any of it.
Our
son is truly amazing! He can do so many things. I know we have been
so blessed. We have had so many people praying for us and I
have felt those prayers. I have never felt anything like the
power of prayer like this before. The only way I can describe it is
“It’s like a force around me that was just always there
comforting me when I needed to be comforted.” I’m so grateful to
all the people that prayed for us and continue to pray for us. I know
it’s because of their prayers, Carter has been so blessed. I’m so
grateful for my husband. He truly is the reason I was able to get
through all of this and continue to get through it daily. We
still have a tough road ahead. But during the times when I have just
felt so defeated, he was always right there helping me get through
it, and he always just knew what to do and say. I love him so much
and I know that I can be the mother that I want to be and need to be
because I have his love and support. When I look at our son I
do not see a birth defect, and I do not think Spina Bifida. All
that means to me is-split spine and the limitations that may come
with it. Rather, when I look at our son, I see Carter Colt Forsyth.
He is limitless. I don’t want our son to be everything I want him
to be. I want him to be everything that God has intended him to be.
*To
learn more about spina bifida and Carter’s story visit the Forsyth
blog at spinabifidadad.blogspot.com
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