I called and I called and I called. I called in each spare second that I got. I called every office that google showed me Dr. Patel worked at. I left quite a few voicemails and hoped to annoy someone enough that they'd pick up the phone. I was determined to talk to the man. With each voicemail I chose my wording very carefully. I simply stated that our son had a defect in which his skull isn't completely covering his brain, and without intervention his diagnosis is fatal. Clever eh? I made no mention of Anencephaly, because mentioning it was an automatic No. We learned that lesson quickly.
Jeff's brother even offered to buy us a plane ticket to Chicago. We were pretty certain that's exactly what we'd have to do...just plant ourselves in his waiting room till he had to talk to us. Extreme measures, I know. But Mommy and Daddy have to do what a Mommy and Daddy have to do. :) He was an internationally known doctor and the thought of him taking time to talk to little old us wasn't something that we really thought would happen. If we were lucky, maybe we'd get to talk to a receptionist whose shaken his hand or maybe even a nurse he works with!
As I was driving home from work on Monday afternoon my phone rang. Wait for it, Wait for it, Wait for it......IT WAS A CHICAGO NUMBER! Finally. Although it had only been a few days it felt like an eternity.
I picked up the phone with a calm, Hello?
DP: Hello, is this Rachel?
R:Yes, I'm Rachel. I am trying to reach Dr. Patel in regards to my son.
DP:Hello Rachel...This is Dr. Patel. (Ahhhhh HOLY JUMPIN!)
DP:I received your voice mails about your son (a tiny bit of shame passed through my mind, just a tiny bit) I am interested in hearing more about what is going on with your son. Did you say though, you were from Saint Louis?
R:Yes, we are. I've been reading about your work and the amazing things you have done in craniofacial surgery all around the world. In particular, your use of 3dimensinal printers with skull reconstruction.Its simply fascinating and I think you are remarkable. (I was trying my hardest to stroke his ego). My son has a condition where his skull hasn't completely formed and it has left some of his brain exposed. I am in the beginning stages of searching for answers, but I really think you are the key to our puzzle. Without his skull he won't survive.
DP:How old is your son?
R: Eh, well here is where it gets complicated. I've read that you like a challenge, you take on the biggest challenges here in the Midwest, and this might be one of the biggest challenges yet. I think you are the perfect doctor for our son though(more ego stroking).(deep breath).
Our son is only 18 weeks (pause, cringe...there is no going back now...) ....gestation.(silence.) Uhh...He's still in the womb.(silence).
Annnndwhathehasis Anencephaly.
DP: Okay (silence). (I braced myself for the dial tone or the kindly worded "your child has Anencephaly and will not survive lecture.")
Have you had a fetal MRI yet?
R: (Ah he bit! YAY) No we haven't. It appears that he has a full intact brain from the ultrasound. It hasn't been confirmed, but I just know its there. We aren't sure if deterioration has set in, how much is functioning and working...we aren't sure of a lot. But, its something that I am desperately trying to get.
DP:Would you be delivering in Saint Louis?
R:At the moment, yes. I'll deliver anywhere you need me to though. I have to have a cesarean section do to a separate issue and because it is the safest way to get him here. So it can be scheduled.
DP:My main concern (uh oh...here it goes) is that if you deliver in Saint Louis there would be no chance of him making it here to Chicago...
R: Oh no worries, Ill deliver in Chicago if need be, wherever you need me!
DP: I have a colleague in Saint Louis who does phenomenal work in pediatric craniofacial surgery as well. We've worked together for 23 years. He's at Children's. I'm going to put you in contact with him and you can get his opinion on the matter.
R: Are you trying to tell me that this is something you wont take on or look at?
DP: No that's not what I'm saying at all. I think it would be best to get a local opinion from a colleague of mine and then we can go from there. Ill send you all of his information and put you in touch with him.
While I was happy that he talked with me and didn't give me a flat no, I was still frustrated. I'm not trying to be pessimistic but I just didn't understand why HE didn't want to look into it...right now. The man does things internationally, why was Saint Louis such a big deal for him?
....Maybe he's a Blackhawks fan.
I started racking my brain at how I could get a fetal MRI. If we could see how much of Luca's brain was fully functioning and how much of his brain mass was there, maybe Dr. Patel would be more certain of us. The trouble with getting a fetal MRI ordered is that there has to be "a need". And as far as my doctors were concerned, at the moment, there was no need. Because, you guessed it, Luca has Anencephaly and he will die. What a pickle.
In the mean time we had an ultrasound with my OBGYN, just to get a peek at little Luca. My father, Jeff's parents, and Declan got to come along for the show. Luca was such a charmer :)
At the end of the ultrasound Dr. L asked how everything was going...and if I ever got a hold of Dr. Patel?
R:Well, actually I did!
DL: Oh, Really? (She was just as surprised as I was)
I explained to her that he didn't dismiss it. He sounded interested but had the concern of being in Chicago and Luca being here in Saint Louis.
Tears started filling her eyes. (not what i was expecting)
DL: Rachel, this is something you really need to think about. If this is something we continued to go forward with, there is a ton of complication for you. We are starting to talk about your life. The kind of incision that would have to be done to get Luca out would be huge, vertical. I don't know if you could survive that. Its already risky, and then because you have two uteruses you could very likely hemorrhage. If you did survive, and we got Luca here in tact, his brain function isn't likely going to be that of a typical developing child. And, you wouldn't be able to ever carry a child again. Your talking about risking your life...risking the life of any future children. Your risking leaving Declan without a Mom.
I looked up at the little wiggly legs on the ultrasound screen and my sweet little toddler chasing his toy bug around the room... and breathed.
2 steps forward....10 steps back.
She offered to do a chromosomal test on Jeff and I. It would be able to check and see if Luca had any other chromosomal issues that could cause further complications. Maybe, knowing if Luca had something else along with Anencephaly, which apparently can be a very likely scenario, would help guide us. It is also something that our insurance can cover.
The more information we can get on our little Luca, the better, so why not!
That was a lot to swallow. A LOT. Jeff was out of town, so I talked to his handsome face via facetime and gave him that little tiny tidbit of an update. We talked about how quickly everything was moving, and how scary all this unknown was! It was a lot to fathom and so much to process. We struggled with what choices were making. Were we helping our baby or were we hurting him? Were we jeopardizing Luca's quality of life if things fell into place like we dreamed? Were we interfering too much? How likely was it really that I would die?! Did we want more kids? Either way, could we just sit back and not try anything? Should we just let it be, "put it all in Gods hands?" Huge questions came from such a little visit.
At the end of that day we knew we couldn't just give up. He was still our baby, no matter what. He was still moving, still growing, still beautiful, still living, and so loved. If every parent just "gave it to God" then how would preventions and cures for once deadly diseases and diagnosis's have been discovered. Instead of just "giving it all to God", we asked God to hold our hand and guide us. Help us DO SOMETHING, and most of all help us to take it one step at a time. Talking about delivery was weeks, if not months away. Today, this week, we are talking about Luca's brain.
Lets just stick with that...and keep whats left of our sanity. :)
So our path continued.
I reached out to a wonderful Mommy with the most precious little girl who was diagnosed and is thriving with Spina Bifida. I knew they LOVED their doctors. Maybe their wonderful connection with them would get us in the door see a doctor willing to grant us an MRI. I was quickly put in contact with her team at The Fetal Care Institute. When their nurse coordinator called me back she talked to me about their process, and how similar it was to Mercys. We could come in for an initial ultrasound and have our records sent over from Mercy, so that the doctors could take a look. She then said, a lot of parents come to them for a second opinion on such diagnosis's and vice versa. It can be very reassuring for the parents.
Bah Humbug...there it was. I didn't need to be reassured. I knew my child had Anencephaly. I wasn't denying that. I can see his sweet little brain-cavityless head floating on the ultrasound screen. What I wanted was a fetal MRI. I want to see how much of my sons brain is there and how much of it works.
WHATS A GIRL GOTTA DO TO SEE HER KIDS BRAIN?! OYE!
I told her again, my intentions, and asked if she thought the doctor would be willing to do that. She wasn't sure but she'd get back to me.
Ooooookay.
I called my fetal care nurse at Mercy, Karen. I explained to her my interest in Dr.Patel and his work in pediatric craniofacial surgery. I told her all about my conversation with Dr. Patel and how I really wanted to get a fetal MRI to see Luca's brain mass, what was there, what deterioration was occurring, and hopefully see what was functioning. She told me she'd talk to some of the doctors and see what she could do.
Oooooookay.
The next day Karen called me back and said she hadn't found a doctor who was willing to order the Fetal MRI. She explained that many doctors wont order it unless they see the need and Luca has... (I know, I know, I know...insert eye roll) and because Fetal MRIs are incredibly expensive and insurance doesn't cover a lot of the cost. However, she had some thoughts! Would Dr. Patel be willing to order it?
R: Hm, I wasn't quite sure, but that would make sense. He would likely want to order one anyways if we went forward with the skull building.
K: Then, if he couldn't then maybe Dr. L, my Obgyn ? Maybe she'd be willing to do it?
R: Given the conversation from a few days earlier...I wasn't so sure.
K: Have you looked into chromosomal testing?
R: Well a matter of fact, we have! And its a go, but it still doesn't tell me anything about his brain. Even if the chromosomal testing told us he had something like Downs Syndrome or a Trisomy it wouldn't deter us from trying to save our son and looking for answers.
Then suddenly God nudged me!!! Maybe I could take it another step back. Ease these damn doctors and insurance companies into our idea.
R: How much can you tell from an ultrasound? I remember looking so much at Declan's brain during his ultrasounds. If we just focused strictly on Luca's brain, could we see how much of his brain was there, what parts were still in tact?
(If the ultrasound worked like I thought it should then maybe we could see Luca's brain mass clearly. Maybe we could roughly determine what parts of his brain are still there, if its split into 2 hemispheres, and maybe blood flow. If he had significant brain tissue missing or if we knew for certain that vital parts weren't in tact, then we'd have a much better idea of where to go with all of this. If Luca was missing these vital pieces our answer would be clear.)
She agreed at what a great idea it was, she wasn't sure if it could be done since the brain isn't encased in the cranium, but she would look into it!
The next day she called me back and told us that she had talked to one of the doctors who thought an ultrasound of the brain would give us those answers. He believed he could get those visuals for us, and would love to help. So... we scheduled the ultrasound.
Relief.
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