Another point for team Luca!
We had met with Dr. L prior to this ultrasound and she had suggested getting the chromosomal test done. It was a much less expensive alternative to a Fetal MRI and could be warranted as a "need" for insurance, whereas the Fetal MRI wasn't. Apparently, since Luca has a fatal diagnosis, doctors and insurance companies do not see the 'need' for further tests on him and other babies alike. Because of this they wont issue it and/or cover its cost. I wish I could throw rocks at whoever made up that rule! The chromosomal test would certainly tell us about other abnormalities that Luca would have, such as down syndrome, trisomy 13, trisomy 18, etcetera. It would likely help us better understand his reason for not being able to survive. Of course, it was necessary for us to move forward, so we immediately agreed. However, we had to wait until Jeff got back into town from work since they needed samples from us both. We did the test two weeks later and then we waited, waited, waited some more.
It felt like forever.
I called the office one afternoon to see if they'd gotten the test results in. I explained to the nurse that it had been well over 3 weeks and that we haven't heard a peep. She dug through my records and apologized for never calling. It turned out though, that Luca was at NO RISK for a Chromosomal abnormality.
Can you read that one more time? Yup, he's at NO RISK for any other Chromosomal defect!
Doctors: A lot, Team Luca:3
Yeaaaah Buddy! Luca and I danced all the way home and just kept on dancing. This was it!!!! They'd now see that something different was going on with our boy, they'd have a change of heart, they'd want to do the MRI, they'd look closely at a delivery plan, they'd look closely at Anencephaly and Acrania. This was a game changer!
We met with my high risk OB, Dr.W, shortly after, and talked about the exciting news that we'd learned in the past weeks. His response was, "While it was "interesting" that the test came back with NO RISK, and it was "interesting" that his brain hadn't deteriorated, it didn't mean that Luca had no problems. Luca was not going to live."
I'd hoped that the new information had changed something in their thoughts and hopes for our son. But, clearly, it hadn't. The appointment was just like all the previous ones. Dr. W explained that it didn't matter where we went, or who we saw, that every doctor who looked at Luca would know that he wouldn't survive.
He pointed at my growing belly, at my Luca, and said, "That brain, that baby right there, is not right."
My baby, is perfect. Shut up. (I didn't really say the above statement. But, I certainly thought it!)
He explained that I should go to Chicago, I should go see other doctors, and if we wanted to use our baby as a science experiment and lab rat, we certainly could. A few papers could be written about him, maybe. But that's all that it would amount to. Luca wouldn't live.
Jeff and I have learned to just shake our heads and nod when they say such hateful things. But I really wanted to throw a rock at him too.
Since stoning is frowned upon these days, we just went on our way. And cried.
I spent the next two weeks in an utter roller coaster of emotions. I had no idea what to do. I felt completely stuck. I didn't know where to turn except to God. I just prayed to God for some guidance. I felt so torn inside. We had zero, literally zero, support on the aspect of saving Luca, from my doctors. I truly struggled with all the opinions on his quality of life. Were we hurting Luca? That comment about him "not being right and being a science experiment" crushed me. It hurt so much, and still does. The statement from my nurse weeks prior about "what are you doing for your baby, and to your baby" just stung. I loved Luca so much, and I certainly didn't want any pain or hurt for him. I wanted to hold him, and love him, and be his Mommy. I wanted him to play in the rain, breathe fresh air, and snuggle on the couch with me and Big Brother. I wanted Declan to have his little brother, and Daddy to take him to a Blues game. I wanted my baby. I wanted answers for Acrania and Anencephaly and I wanted doctors to give a damn about every ones life, no matter how small. I wanted so much more for my son and for all of these babies but I didn't want my child to become a "lab rat". I prayed to God for answers and if this was him calling me to do something, that he be sure and certain to protect Luca in all of it.
We spent those two weeks enjoying Luca, finishing up our first fundraiser, and waiting till our next appointment with our doctors in December.
Then God answered.
I was laying on the couch when my phone shook. It was our friend Laurel and she told us about the upcoming season premiere of KSDK's Frontline for Hope, a show that chronicles the stories of the brave children at Children's Hospital. In the season premiere preview a sweet baby girl named Aliyah is born without the top of her skull and diagnosed with Acrania, the same diagnosis that Luca was given after we learned of his intact brain. I began googling Aliyah like a mad woman but unfortunately there isn't much about her. We did know two things though, she defeated her death sentence and she is a moving and grooving sweet little girl. Our hearts soared!
We anxiously waited for the premiere and the whole family came over to watch it.
Aliyah is beautiful and thriving. She moves, eats, babbles, is a sassy little lady full of personality, all because her parents and her doctors tried something. It had never been done. They didn't know if it would work, they weren't sure how her brain organization had developed. But DOING SOMETHING is the only way medicine evolves. I really felt like that was God telling us that he is protecting Luca, we needed to push forward, keep our spirit, and we needed to find these doctors to love, appreciate, and help Luca.
The following photos are courtesy of Frontline For Hope.
Sweet baby girl Aliyah after she was born. The neurosurgeon covered her brain with Shark cartilage to keep it sterile and preserved,
Aliyah now...
Shes beautiful. And she is such a miracle. The fact that her doctors are right here in Saint Louis, where we live, and she was diagnosed with Acrania, left us in awe. God couldn't have been more clear.
So we got busy.
I recontacted The Fetal Care Institute at Cardinal Glennon.When we'd first heard about Luca's diagnosis an amazing Mom at the school that I teach at put me in contact with them. When I had talked with them though I had become discouraged, because I was impatient only looking for an MRI, and truly think I was keeping my fingers crossed that my doctors would come around. Id hoped they'd forgive me and still be willing to see us. In my heart I knew that's where we needed to be. It has just taken us awhile to get to that point.
They were incredibly kind, and understanding, and scheduled us for the following week.
Dr.Vlastos here we come!
I have prayed for your family and precious baby. I have cried, been upset with the Drs, and now hopeful that they can fix Luca. Thanks for keeping us informed.
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