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Intro:
Patrick and I met sometime in 1984, when we were in high school. At the end
of 1985 we started talking and became good friends, by the beginning of 1986 we were
dating. This was also the year we both graduated from Plymouth HS. We dated for 2 years
and then got engaged, and 1 year later on June 4th 1989 we got married. Before we were
married we talked about how important it was for us to buy our own home, have some money
saved up and to have the larger bills paid off before we would start our family. See our photo's 1986-1992.
In July of 94, when my husband and I, were married 5 yrs we decided we were ready to start our family! I picked out a great OB GYN in town, Dr Bellucci. I got off the pill and started to take a multi/vitamin and folic acid (this was long before I knew that folic acid 'could' help prevent some types of birth defects). It took us 6 months to get pregnant. In March 95, I found out I was 6 ½ weeks pregnant. We were so excited and couldn't wait to share our happy news with our parents. At 16 ½ weeks, I had a blood test that showed a high alpha fetoprotein (AFP), I didn't worry right away because I didn't know of Spina Bifida (yet) and thought maybe I was pregnant with twins (this could have happened, because on my father's side of the family there are 4 sets of twins). Then I was sent to have a ultrasound done, the tech was very quiet through out the testing. I got worried and started to ask her questions but was told I had to wait for the doctor. After 15 minutes of asking her what was wrong, my doctor came in. He said that the tech was done and that he wanted to see us in his office. That is when we were told that our baby had Spina Bifida (SB), Hydrocephalus (Hydro) and Arnold Chiari Malformation (ACM II). I never cried so much. We asked him a thousands questions that he just couldn't answer. But he urged me to go to Boston for a type II ultrasound and amniocentesis (amnio) this was done at 17 wks we asked them our questions but were still very confused. At 19 weeks we got the results on the amino, and it was then confirmed that our baby did have SB but had normal chromosomes. We were asked if we wanted to know the sex of the baby and were happy to be having a boy. Shortly after that, we picked out the name Andrew, the baby book said it mean "strong and courageous"--so we could start calling him by name. After all we knew he would be both a strong and courageous child! The doctors couldn't tell us much on how he would be, but did tell us the absolute worst-case scenario. They told us he MIGHT never walk and he would have no control over his bowels, bladder and could have learning problems due to the hydro in other words he would be severely disabled.
Then we started our L-O-N-G journey, to every hospital we could go to. We first went to Mass General Hospital in Boston Mass, and got the same worst-case scenario. I'm glad that I didn't stop looking after that first doctor (who's name is not worth mentioning) at M.G.H so coldly told us our baby had SB but that we were still young and should end the pregnancy and start over....... START OVER??? Who was this doctor kidding? Who the heck was he to make this decision for us! I was shocked and angry at him, and raised my voice to ask him, "so, if you were to be in an car accident tomorrow and needed to be in a wheel-chair for the rest of your life, your 'mother' should stop loving you?" His ridicules answer to me was "Hummm.....Well, we are HERE to discuss (and pointed to my stomach) that child!". I got up, looked at my husband who was in a state of shock as I was and said "Lets get the @#$% out of here", and we left his office without another word said or paying for the visit and never did get that bill!! Finding out about our Andrew's birth defect was the hardest thing we ever had to deal with and he was acting like it was no big deal. Honestly, I felt that this doctor didn't have the time or the patients to deal with parents like us. After M.G.H we when to Providence Women & Infant Hospital in Rhode Island because I heard that they had a SB clinic there. But they too were not hopeful. We were determined to keep our baby and to find someone who was willing to help! We just wanted the best for our baby. It wasn't an easy time for either of us. For the first 2 weeks after the amnio result, all I did was cry, pray and cried some more. Then, we got serious........ we ended up back in Boston, to a wonderful caring hospital called, Brigham and Women's Hospital. There, we were put in contact with the head of Obstetrics, Gynecology and Maternal-Fetal Medicine. by who believed that by having Andrew via C-section would be better for him in the long run, then going through a regular delivery. Her thinking was because of his on set of hydro and not knowing if a sac was present, they could be gentle with him during surgery. She was of great support to me then. We read EVERY piece of information we could get our hands on about SB and let me tell you, there was NOT a whole lot out there at that time (June 1995)!! We even found a great support group on the internet made up of parents and adults with SB. Shortly after Andrew was born, I started a weekly spina bifida chat, this chat was to be of support for those SB parents on America Online, and the chats did very well for over 2 yrs. (We are no longer with AOL) So I don't know if they are still going on there.
I had a great pregnancy, I had no morning sickness and loved the
feeling of Andrew moving around inside of me. I had a happy feeling most of the time.
Andrew was due on Nov 5th 1995 (which is my mothers birthday) but we planned for him to be taken by C-section on
the 1st of November. Only, Andrew had plans of his own, he couldn't wait to see the world.
On Monday Oct 30th, two days before my C-section was scheduled, I went into labor. That
morning I had seen blood but was in denial, I drove myself into Boston a hour and a half
ride for my non-stress test appt. I didn't know that the cramps I was having was labor (I thought it
was the big breakfast I had that morning at Mc D's, that bacon, egg and cheese biscuit
with a hash brown and a large O.J, sure were yummy). I was there to have
yet another non-stress test, I had been having
them weekly since my 8th month, then every day at
the end of the pregnancy. Andrew was being a lazy baby, I was told. He didn't want to
move
much for the test but had lots of hiccups that felt a bit funny. I was asked if I was
having contractions that day, because the nurse could see them on the monitor. I told her
"no" but I have a stomachache -then she started to laugh sort of and told me that my cramps were
contractions and that they where 4 mins-10 mins apart. She called my doctors
office and was told they wanted to see me right away. The nurse walked me over to the office, which was just down the hall. My OB checked
me and told me that I was, indeed in labor and that I was 2-3 centimeters dilated. My
doctor told me to call my husband and my best friend Paula who was my coach, because
I was going to have the C-section as soon as they stopped my
labor. I walked about waiting for them to get to
the hospital. I was a
mess! Picture me, calling Patrick and Paula on a pay phone out in the hall way, and
holding my breath with every contraction. Isn't it funny how only after I was told I
was in labor that I felt the pain? My labor was slow and not very painful but the idea of
having our baby that afternoon made me scared more then anything else. This was it, my son
was going to be born, ~Would I be a good mother? Would he really be fine? This is what ran
through my mind as they got me ready for surgery. They didn't want to stop the labor
and wait 6 days to have the C-section, they
knew his lungs were fine. I was so scared about the surgery but it went just fine. No
problems with the C-section, no pain and very little blood was lost.
Both my husband and my friend Paula got to stay in the O.R. with
me the whole time. I think I
was calmer then both Patrick and Paula was lol
Andrew was born Oct 30th 1995 at 4:25 PM at Brigham and Women's Hospital
in Boston,
by Dr Louise Wilkins-Haug Andrew weighed 6
lbs. 9 oz and he had Myelomeningocele
with no sac. He stayed at that
hospital only for an hour before he got transferred to Children's Hospital in Boston Mass (right next
door). He wasn't fully out of me before he took his first breath,
and I first heard him cry. I
looked at Patrick and said "that's our boy!" as a tear ran down my cheek. I only
got to see him for about 25-30 seconds right after birth it
was just long enough to kiss his soft pale pink and warm
face before they took him away. Patrick got to see Andrew's back before they wrapped him
up in a blue blanket. I didn't want to see his open spine at that time. But now I wish I
had, only so I could remember the site before and after his surgery. We didn't
even take pictures of his open back.
At 18 hours old Andrew had his first surgery to
close his back by the BEST Neurosurgeon Dr Joseph Madsen, MD he
said he was an L4-S3. I never got to hold him or nurse him after he was born, until
he was 3 days old. The fist time I saw my son was after his
first surgery, he was so pink, and a
bit swollen still from surgery. He was able to came home at 10 days old and he was
beautiful and happy. But by the time he was 3 wks old (one day after Thanksgiving) he
began vomiting and a VP shunt needed to be placed. Dr Madsen, did this surgery also, this
shunt is not a regular shunt its a new type. It's called a Codman
Hekim Programmable Shunt. Andrew was in a
clinical trial of the Codman Programmable Shunt Valve System a case study
being done at the time, at Boston's Children's Hospital. This VP shunt is programmable
with a magnet. It has more then the 3 settings that other shunts have. But the magnet can
be erased with an MRI (Magnetic Resonance Imaging) and then needs to be re-programmed by
the doctor. When Andrew was 6 weeks old he started having problems breathing
and feeding, he had
what is called stridor -a harsh croupy noise while breathing and it was very loud. A CT (Computerized Tomography) was done and
it reveled that he would need to have a decompression of the Chiari. The
decompression called a Cervical Laminectomy also done by Dr Madsen, was
at C1-C4 with dura expansion. His brain stem was being pinched by the bones on his upper
spine. But with this surgery he lost a lot of blood and had to have a blood transfusion
and from our guess he got CMV too. We then had to wait to see if
this surgery would help him breath better, because if it didn't then he would need to have
a Tracheotomy done this is a creation of a new airway outlet through the neck.
Then a miracle happened, within a few
days the noise Andrew had been doing while breathing was gone!!!
He could breath just fine and so the trachea surgery was not
needed. We were told at that time, that he could still have a bit of stridor from time to
time when he got a cold, and to watch it so it didn't get worse. But so far we have not
heard the stridor come back and he has had many colds!
He is such a happy little boy. He is doing great, MUCH better then the Doc's
first said or thought he would, even with the surgeries. The only thing at this time is
that he can not void on his own. He can not empty his bladder completely. He had
reflux into his left kidney but it was surgically corrected at age 2. With a catheter
he
drains his bladder every 4 hrs in the day his last cathing is at 8pm each night and
goes to
bed. Then he's caths first thing in the morning. He
started
sleeping through the night at 2 1/2 months old but at that time we had to cath
him every 2 hrs around the clock......glad that's over :) Since he has feeling
*there*, we
are hopeful that when he is older, he might be able to tell that his bladder is full and
could learn to empty his bladder without cathing. But if not,
he's fine with cathing and is cathing himself with
minimal help :) It is important to cath to keep UTI's down and prevent kidney infections. Andrew
was also born with Hydronephrosis (water in the
kidney). He has to have routine
bladder and kidney testing to keep an eye on this.
Andrew is on Ditropan for bladder spasms and is dry all the time and in regular
underwear. He had been taking Furadantin to help prevent bladder and kidney infections until the reflux was corrected in Dec 97.
He also can push, so a
bowel routine has been achieved, but is on-going as this is
most
difficult for most children with SB.
Andrew has great movement from his hips (he can lift them up off the floor) to flaring his toes. Better on the left then on the right Neurosurgeon is still surprised that he can move his legs and feet so well, but does see a weakness in the plantar flexion. We have been told that 'God' willing without other problems (tethered cord is what I dread) he will be a strong walker on his own. Andrew started walking with short leg braces call, AFO's (ankle-foot-orthotics) they let him move his ankles when walking and this too will strengthen his legs as well.
Andrew was a lot of work at first, but I'm sure just as any other baby would be. Things did get easier as the days went by, honestly they did. I thank God *everyday* for all that he can do. He is my little angel, and he is more then I ever excepted and he makes me melt with each and every smile and kiss he gives me. And by just looking at him, you would never guess that he has had a hard life thus far. I will always try to keep it that way! We love him so much that words alone could never express it.......He's our little man!!!
Thank you for reading !!
A quick update:
Andrew is now 11 years old and still on his first shunt (knocking on wood!!) Andrew
wears
AFO (a brace just below the knee) on both legs. And he wears these most of the day. He can walk pretty well independently with
just these. He is also able to walk with out the braces in the
house. He loves to watch TV, reading books and playing games on
"his" own PC and now on PS2. Andrew is in Middle
school in the
fifth grade and enjoys school
events!
Would you like to know how he is doing now?
Click Here -were you can read a monthly report on Andrew.
We went on to have another great baby boy Nov 27, 2000. Shane
was born healthy but later was DX with food allergies,
eczema and Asthma, Andrew loves his brother
and is teaching him how to play cards and chess lol.
Click on Shane's
name if you would like to see his pages though I don't updated it often as I
do Andrew's!
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