Headed to Houston to See a CMV Specialist

Well, it is Sunday afternoon and we are on our way to Houston to see a CMV specialist at the Texas Children’s Hospital.  It has been a whirlwind of a few days.  I spent the rest of Wednesday after we found out reading everything I could about CMV, going through the studies, and exploring possible treatments.  I know that our doctor in Dallas told us that there are “no treatments” for CMV, but that is not completely the case.  As I mentioned in the last blog post, the use of globulin treatments is often used and the studies completed have all been very favorable.  I knew right away that I wanted to find a way to try to get those treatments if there was any way possible.  While it is not fully approved yet (getting anything approved for a pregnant woman is nearly impossible), it IS being done – and with good results. What exactly is the globulin?  At the time, I really didn’t care – but I have since learned that it is basically donated plasma with high antibodies to the CMV virus.  From what I understand, the treatments will help neutralize the virus and help prevent further damage from being done, but it will probably not reverse any damage already done.  The treatments can be given through an IV, or in some cases, is even injected directly into the placenta or umbilical cord.

The next day (Thursday) things just miraculously fell into place.  I sent an email early that morning to an organization called “Stop CMV” who helps put you in touch with doctors in your area who are knowledgeable about the virus and willing to help.  They immediately gave me a call and I spoke to the lady who runs the organization.  This is a cause very dear to her heart, because she had twins that went through a similar experience years ago.  She said that they would send my email on to Dr. Adler and hopefully he would contact me soon.  Dr. Adler is pretty much “the guy” for CMV and he has conducted many studies and written several papers about the virus throughout the years.  Here is a link with more about him and his pulished studies:  http://www.cmvregistry.org/stuartadler.html

Within an hour of receiving the email, he called my cell phone – even though he was in Europe on business.  He said that I sounded like a candidate for the globulin treatments, but he wasn’t familiar with any doctors in Dallas that he could refer us to for immediate treatment.  I told him that’s okay – we can travel wherever you send us!!  He said that he would find us a doctor and to await an email from him with a referral.  After we hung up, I immediately started searching the Internet on my own for a doctor who might help us.  I wasn’t sure how long it would take to hear back from Dr. Adler – I knew he must be a very busy man!  Everything I found pointed to a Dr. Demmler-Hessler in Houston who is a congenital CMV expert.  I found several of her papers, studies and blogs on the Internet and sent her an email about our case right away.  Minutes after I hit send, I got the email from Dr. Adler referring us to the exact same doctor.  He also emailed her personally on our behalf.

Minutes later I received a call on my cell phone from Dr. Demmler herself.  She had received both of the emails and agreed to see us as soon as possible.  Never in my life have I seen such a quick response from doctors – I expected to be passed off to nurses and research assistants first, but it was like everything just fell into place.  Within a matter of hours, I was sending over all of my medical records and insurance information and waiting to hear back about appointment times.  Time is ticking!

On Friday I received confirmation that we were set up for several appointments on Monday.  Starting at 8am we have an ultrasound appointment, then a genetic counseling appointment, then next a meeting with Dr. Demmler, and then finally a meeting with a Dr. Fox at the maternal fetal medicine specialist office.  Basically, they have a team approach.  Dr. Demmler will consult with us as a CMV specialist and would be the one to care for our baby after birth.  The maternal fetal medicine specialists would administer any treatments during pregnancy and manage our case during the pregnancy.

I asked Dr. Demmler – if things go smoothly and IF you agree that I am a good candidate for the globulin treatments, is it possible that I could get a treatment while I am down there??  She said it was definitely possible and to plan on staying for a few days if necessary.  WHAT GREAT NEWS!!  My only concern was the cost of the treatments.  I had read in one of the studies that while the globulin was expensive (like $5000 a treatment), the studies concluded that the cost of the treatment was found to be less expensive than not doing them in the long run.  The CMV babies that did not get the treatment ended up needing more special care after birth that was even more expensive than the globulin.  I knew that if we ended up getting the treatments, I would more than likely need several doses, and well….you do the math!

I anxiously awaited a call from the fetal medicine office, who had contacted my insurance company to try to get the pre-authorization.  We had already met our deductible for the year just going to the specialist in Dallas, and during our last appointment we starting paying on the 80/20 plan (we paid 20% of the last charges for the specialist/sono, etc.).  My hope was that insurance would at least agree to pay the 80% and we would only have to pay 20%.  When they called to tell me that the globulin treatments would be 100% covered by my insurance, I almost fell out of my chair and had to ask her twice – are you sure?? 

This has all fallen into place so easily, I can only conclude that we are doing the right thing and our decision to pursue a 2^nd opinion and possible treatments is the right course of action.  We are fully aware of the possibility that the treatment may not work (IF we get it) and the baby could just be too sick already to fight off the virus.  BUT, I don’t think we will regret trying to fight for the baby and doing everything possible to help him – medically and spiritually.  We met with our priest this morning before church and also got the Sacrament of Anointing/Healing. 

We are eager to meet with the new doctors tomorrow and get another opinion about our little boy, how he is doing, and what we can do to help him.  Someone close to me who has been though LOTS of medical issues told me “if you don’t like the answer your doctor gives you, find another one…..you will find that they will probably tell you something completely different.”  We are hoping for that!

Thank you all for your support and love and we continue on this journey with our little “Silas”.  Yes – we have decided on a name as well!  We sat down with Samantha and Sutton yesterday and explained to them that the baby was sick and we would be going to Houston for a few days to meet with doctors who were going to try to make him better.  Samantha and Sutton both chose the name Silas out of the choices we gave them, AND it is Stuart’s choice (and original idea)….so Silas it is!

Please continue your prayers for Silas and for our family.  They mean more to us than anything else.  I will try to post an update tomorrow once we know more.