Mia Elizabeth

Our O-baby was born on 8/08, her name is Mia is she is doing wonderfully.

We were diagnosed with an O (and a 2 vessel cord) at our 19 week ultrasound and it was a long road from there. We were given the option to terminate but for us that wasn't an option. So we were initially sent right to the cardiologist at a local childrens hospital where we were told that in addition to the O (they said it was her intestines) and the 2 vessel cord that our daughters heart was slanted and that these things together most likely mean a genetic disorder. The Cardiologist said she felt there was a very good chance that it was down syndrome and we should read up and prepare. We had done the amnio the day before so it would take some time for the results to come back. The next week we got the FISH results back and everything was normal - but we still had to wait on the final results.

We decided to go to Children's hospital of Philadelphia. (CHOP) for a second opinion. After all days tests - we were told that the O was considered a Giant one because it was the liver (not the intestines as we were first told) and that her heart was not slanted. We had been told by the other doctors that because of the 2 vessel cord she would most likely be born early and very small. But CHOP was not concerned with this. They felt this was an isolated O and it was only about 3 cm of her liver and that the final amnio results would be fine. They were right.

We continued our care at CHOP and would deliver there. They opened the first high risk birth center in the world (in a childrens hopsital) in June and Mia was due in August. So we were very lucky with the timing. She did come 2 weeks early (my water broke at work :)) and weighed 5.8 lbs. She was breathing on her own from the very beginning and never once needed help.





Her O was small and would be repaired with-in her first week of life - it wasn't repaired immediately because they were waiting for pressure around her heart to decrease (this is normal with smaller babies). Her O was repaired when she was 6 days old.





She did have a VSD (heart murmur/hole in her heart) but nothing that was too concerning and these things can sometimes close on there own. Once she was diagnosed with a VSD - they had to do further genetic testing to be sure everything together was not related to a genetic disorder - so we again had to wait and pray and luckily for us everything again came back normal. She was released from the hospital at 21 days old with a feeding tube but with-in a week she was eating on her own.





She is now 7 months old and at her 6 month appointment with the cardiologist we were told that her VSD is closing on its own and he took her off the meds that she has been on since birth. So we are excited to finally be med-free! Mia is small - only about 14 lbs (her height and weight are in the 4-5th percentile) but other than that she is absolutely perfect. The doctors are not concerned with her growth since she has continuously gained weight. Her O scar was made to look like a belly button - and its hard to tell its not one! CHOP did an amazing job!





I know i am luckier than most and our story ended a lot quicker than some but i felt i should share. I feel extremely lucky to have gone through everything we did and be were we are today. It was a SCARY and what seemed like an endless road but before long - its over and its just a distant memory. We were given alot of worst case scenerio's and i thought for sure some of them would be true but we are truely a story of hope and for us, everything turned out better than we could have imagined.

Patti Sam ~ Mommy to Mia

Mia Update:



In August of 2009 we went for her one year old follow up with the surgeon at CHOP and they said she looked great and that we did not have to come back - the surgeon said it was basically like she never had the O. At her one year follow up with the cardiologist - they said her hole was mostly closed on its own and that we would only have to come back for annual check ups to be sure nothing had changed. Then at her 2 yr old check up we were told her VSD completely closed and we were all done with the cardiologist! :) So for us - that closed they chapter on the O...hopefully for good! That was very exciting.




Mia is a big sister now - her brother Brayden was born in December 2009 and she will be a big sister yet again in early May 2011 - this time to a little sister. She is an awesome big sister. She is very caring and helpful. She loves playing mommy to her baby dolls and gets soo excited when we see little babies around - so i'm pretty sure she is going to be a big help when her little sister gets here. She loves helping mommy, being daddy's little girl, doing puzzles and is my little "smarty pants" ;)




Mia is still small compared to most - only about 23-24 lbs at 2.5 year old. But still the doctors are not concerned as she has always been on her own growing curve and as the surgeon from CHOP put it - there are worse things in the world than being petite! :) She loves her fruits and veggies and for the most part is a great eater!

Patti Sam ~ Mommy to Mia