Our Sweet Little Angel
Diagnosis: Severe Ventriculomegaly & Hydrocephalus
By Katrina's Mom
April 5th, 2008 was a very good day. We were moving into a new house, and to make things even better, I took a home pregnancy test and after
months of trying, we were finally pregnant! December 10th was supposed to be the due date. The most amazing and best Christmas gift we could ever
receive. How could we ask for anything more wonderful! The pregnancy started out great with only a little bit of morning sickness, but nothing I
couldn't handle. I did everything properly: ate healthy, took my prenatal vitamins, never drank. I believed that since I was doing everything
correctly, nothing could go wrong. Oh how naïve I was. There are just some things you have no control over...
Our first ultrasound was at 13 weeks because the OB couldn't hear a heartbeat and said my stomach felt as if I was only 10 weeks along, so he
said my dates were off. I knew, however, that I was not wrong with the dates, so I cried myself to sleep that night, worrying that I had miscarried.
Finally the time for the ultrasound came, and the technician checked everything and I heard the words "baby's got a good heartbeat". PHEW! All the
built up anxieties and worries literally went away in an instant. Our baby was fine! So we continued on happily, knowing baby was doing well,
excited to finally tell the rest of our family, friends and work.
On July 7th we went in for our routine 18 week ultrasound. We were so excited to see how much our baby had grown from the last ultrasound. The
technician pointed out the little feet, and showed us how strong the heart was. We couldn't stop smiling as we stared at the screen. Then she said
she had to go talk to the Doctor. It didn't even occur to me that there was probably a reason why she was 'discussing' things with the Doctor. It
was our first time being pregnant, so we thought that was just procedure. We waited in the room for a good 15 - 20 minutes just smiling at the
pictures she printed off for us. She came back with a solemn look on her face and said we should go to our Doctor's appointment (which happened to
be right after the ultrasound), and discuss something minor about our baby's brain. My heart started pounding like crazy as these horrible thoughts
of what could be wrong ran through my head. My husband told me to calm down as the technician was just doing her job of following up thoroughly. I
honestly really tried to believe that, but deep down, I just had this gut feeling. Maybe it was a Mother's instinct, I don't know what it was, but
I just knew something was horribly wrong.
The OB looked at the ultrasound report and told us that the ventricles in baby's brain were enlarged to 12mm each, where the average should be
between 4-7mm, but no more than 10mm. However, he said he wasn't too concerned, as there are quite a few cases of children with ventricles this
size, and the outcome is perfectly fine. He did, however, recommend that I take the triple marker screening, and get another ultrasound done in 2-3
weeks time. Naturally, I was freaking out, cried a lot, and worried constantly for our little one. We did some research on mild Ventriculomegaly,
and found out that as long as the ventricles didn't get any larger than 12mm, our baby would be perfectly normal, so we felt somewhat relieved and
tried our hardest to just relax.
On July 22nd, at 20 weeks, we were referred to the best hospital in the city for pregnant women. We had absolutely no idea what to expect. It
seemed as if every time we went to the OB, we would get nothing but bad news. We started with the ultrasound in the morning, and then had to wait a
number of hours to see the Doctor. We were finally called in to the room to meet with the Geneticist and genetic counselor, and by the looks on
their faces, we knew they had terrible news for us. They got right to the point and told us that since our appointment two weeks ago, the ventricles
had enlarged to 17 and 18mm. They had enlarged 5-6mm in just two weeks, something that was absolutely not normal. Our baby was now diagnosed with
an isolated case of severe Ventriculomegaly and Hydrocephalus.
She explained to us that if our baby does even survive to term, there would be significant damage to the brain, resulting in severe mental
retardation - considering our baby basically missed the entire brain development during the whole 2nd trimester. They began discussing the option
of termination, and I just lost it. I started sobbing out of control. How could I even consider stopping the heart of a baby we had wanted so
incredibly much? I will never forget the words she said as I sat there crying: "I really wish I could tell you everything will be ok, but it won't
be. This doesn't look good at all." The Geneticist suggested I have an amniocentesis to determine if it is a chromosome issue (the triple marker
test came back fine, but the amnio might be able to give some insight to what was going on.) She also gave us the option of doing a fetal MRI and
talking to a Neurologist at the time of our next ultrasound in two weeks.
The next two weeks were the most agonizing and distressing two weeks of our lives. My husband and I had a difficult time trying to focus and
figure out what we should do - one day we said we would keep the baby and the next day we thought it would be in our baby's best interest to
interrupt the pregnancy, since there would be little or no quality of life whatsoever. Our main concern was that we did not want our baby to be
born and then have to suffer and be in pain. We decided to just wait and see the size of the ventricles at the next appointment - living off the
hope that maybe, just maybe, the ventricles would shrink in the time being.
August 6th eventually arrived and we were absolutely terrified of the ultrasound results. Both our immediate families came with us to the
appointment, which we are so incredibly grateful for. We met with the Geneticist and again she had that look on her face telling us that something
was horribly wrong. She looked me in the eyes and said "it's not looking good." Only two weeks since our last appointment, where the ventricles
were at 17-18mm, they had now enlarged to an unimaginable 22mm, each ventricle. The amnio and blood test results came back fine, so even the
Doctors were left in the dark as to what was going on. They believe there was a blockage somewhere that just didn't develop properly, which
unfortunately resulted in the fluid being backed up and having nowhere to flow out to.
We met with the Neurologist to get more opinions on what was going on and she discussed the MRI, telling us that the brain did not look remotely
like how a normal brain should look. We were also told our baby would have severe mental retardation, never being able to eat properly, move
properly, or let alone breathe properly. She said very gently, "if you were to have this baby, I would be very, very concerned." It was in that
exact moment that both my husband and I knew what we had to do - there was no way we could let this innocent little baby come into this world and
be in pain and not know of anything else. That just wouldn't be fair. We asked for the sex of our baby and to our surprise, found out we were having
a little girl. We had both been so convinced we were having a boy, that it hit me really, really hard as realization set in that I'd never be able
to dress her up in cute little dresses or have fun braiding her hair. We chose the name Katrina, because it means 'pure' - so perfectly fitting for
our pure, precious baby girl.
Two days later, August 8th, at 22 ½ weeks, was the hardest day of our lives. It was the day we went in so they could stop Katrina's heart. When
we arrived at the hospital with my husband's parents, I absolutely broke down. I just stood outside the room screaming and sobbing. The three of
them literally had to hold me up from falling to the ground. The nurses somehow managed to get me into the room so the Doctor could give me a shot
of potassium chloride in order to stop her heart. My husband and I took a few minutes alone in the room rubbing my tummy before the procedure began.
We sat there sobbing uncontrollably. I read her a poem I wrote for her and he read her a letter he had written about how much joy she had brought
to our lives. We then read the book Goodnight Moon, something we had read to her almost every night for the last months. We told her how much we
love and will miss her and got the Doctor to come in. A nurse took me upstairs to a private room and they began inducing me just before noon that
day.
We lost our Angel to Heaven at 6:03am on August 9, 2008. She weighed a mere 545 grams. I had chosen to deliver her the old fashioned way of
natural labor, because my husband, myself, and both of our families wanted the opportunity to properly kiss her goodbye. We were all able to hold
her for a good 10 hours after delivery, which we will forever cherish. She was so absolutely perfect in every single way - except for the fact that
she wasn't breathing. Her hands and feet took after mine, being long and slender, and she took after the perfect nose of Daddy's. We are so sad we
never got to see her beautiful eyes, as they were closed when she was born. We took so many beautiful photos of her and took her footprints and
handprints. I held her for so long in my arms and just cried as I kissed her tiny feet and beautiful face. I knew I eventually had to pass her on
to the nurses - forever. I took the opportunity to whisper how much I love her and how grateful I am for being able to carry her for those 5 ½
months and to have felt her soft kicks. I gave her a huge kiss on her nose, took one last photo with her and passed her on to my husband to do the
same.
When we arrived home that evening, I was so out of it and in such a state of shock. It was excruciating looking at or rubbing my stomach and
then having to remember that she wasn't in there anymore. I was lying on our couch and took a look out the window and noticed the most beautiful,
largest rainbow glowing in the sky. We know that was Katrina telling us that everything will be alright and that she is at peace. She is in the
best place of all where she will never have to face fear or suffer in any way. I am happy knowing that Our Sweet Little Angel will be waiting for
me when it is my time to go.
To all those having to face make this unimaginable decision, I will not lie to you - it is probably the most painful experience you will ever
have to endure. As I write this, it has only been one month since we lost our little girl, but each day does seem to get a little bit easier. I
have started to laugh and enjoy life once again - something I felt so guilty about up until nearly a week ago. She has taught me to appreciate
everything just that little bit more and never take anything for granted.
I know we will never, ever forget her and she is constantly on my mind every single second of every single day. Some days are good days and some
days are absolutely horrible days - you just have to find something that gives you the strength to carry on. I find looking at her photos and
mementos, visiting her gravesite, writing stories and poetry and just talking to other people about her have truly helped me get through this
difficult time. Never look back and regret your decision. We made the decision out of love for her and it truly keeps me strong knowing that my
little girl is in a better place without having to face the fears and pains of our world. Just be strong...
We love and miss you so incredibly much, Katrina, more than words can ever describe. In such a short time, it is amazing to see how many lives
you have truly touched. You are our first born, and we are happy to tell people that we have a beautiful daughter - one that we sadly don't get to
take care of or watch grow up, but instead, you get to take care of and watch over Mommy and Daddy!
