Friday, November 20, 2009
Thursday, November 19, 2009
Now that we have settled on a doctor, it is time to get started doing all of the pre-screening work, and getting the PGD test set up. First off, we called the PGD lab and got the paperwork filled out to start building our test (or as they call it, “probe”) for detecting MCADD in embryos. They were super nice and very easy to work with. The forms were simple enough, and I have now sent them both Chris’s and my genetic test results along with Noah’s over to them. This part is pretty crazy. They collect DNA samples from us using toothbrushes. They are mailing them to us as we speak, and we will scrub the insides of our mouth with them and mail them back. I thought this was amazing. Everyone that I have told about it since learning this all seem to watch CSI and SVU and all those crime dramas, and are like “oh yeah…toothbrushes…” in a nonchalant way. Guess I am not up on the latest medical technologies! Anyhow, they also want our parents to do the toothbrush thing too so that they can be as detailed as possible in making our unique test for us.
Something we are strongly considering doing is we can have them do an extra leg of the test where they look for whole panel of things like down syndrome, spina bifida, cystic fibrosis, etc. It is a little bit more money, but after having been 1 in 15,000 for a disease, I think about the odds of cystic fibrosis being 1 in 2,000, and my stomach flops over. I would hate to spend all this time, effort, energy, and money preventing one disease and overlooking some more obvious ones. I am already going to be a bit of a paranoid mother having lost a child already. To have a sick one after this would just be the end of me. It’s the whole point of why we are doing in vitro to begin with. We can add that on at the last minute. There is nothing special to build for it. It is a canned test that they have ready to go.
So where we stand right now on the PDG test is, they have all of our records. They are sending us the toothbrushes, which will come in the mail early next week. Chris and I and our parents will swab with them and send them back. We will then have to watch a DVD on the whole PGD process that they are sending us and will do a phone consultation with their doctor after that, and get a final projected time it will take them to build our test. We hear it can be anywhere between 4 and 10 weeks. With the holiday season, it may be on the longer end of that, however, they are very familiar with MCADD in this lab and build these sorts of probes all the time, so it could be sooner. We just don’t know. We are fine to be patient though, because we want it done right.
Today we went to the fertility doctor to finish up the pre-screening tests they wanted us to do. Everything we do with them has to be planned around where I am in my menstrual cycles. It does make these visits somewhat inconvenient, because I don’t have much warning (maybe a few days) of when I need to go. There is lots of counting days and guesswork as to where I might be in my bodily processes, but they are pretty adept at guessing right.
I have been pounding the pavement, trying to get my medical records from the other clinics I have seen transferred over in anticipation of this. I must take a moment and say that, holy cow, did I choose the right doctor! I had done a pre-screening test with Doctor #1 (see post called “Breakthrough” below) and he was by far the worst in terms of getting things transferred over in a timely manner. Those of you that know me know that I am crazy organized and have the ability to be like Chinese water torture when something needs to get done, and let me tell you I was on them. I called multiple times, and if the person I needed wasn’t available, I insisted on waiting. I talked to their records person twice yesterday, and she swore to me she would get my records faxed over. Did she? No. Someone else over there mentioned that she is transferring a lot of patient’s records to other clinics right now (rats leaving a sinking ship?). My new doctor called over there today to see if they could fax my records this morning, and they hung up on her. We had no choice but to make do. As I mentioned earlier, everything is so timed as to when you can do stuff, and I don’t want to wait until next month, so we may have repeated a test or two thanks to them. Maybe that is just one more way of them trying to stick it to me for leaving. Who knows. Either way, not impressed, and really feeling even more glad I switched.
When you work with one of these clinics, they all insist on doing some pre-screening work to make sure that everything looks ok. They look at my uterus to check for any abnormalities, along with my ovaries, using an ultrasound. They check my hormone levels through blood work. In vitro is a big deal, and they want to make sure that before they implant anything, that there is nothing weird that could cause problems. Chris got checked out too. As modest a person as he is, I won’t say any more than that! Both of us checked out to be perfectly healthy. There are no issues. We are both very fertile people. They were very pleased to see that, and said that their only concern will be the medications they put me on. Some women respond too well to the hormones they use and their ovaries can be over stimulated, and cause you to drop crazy amounts of eggs. I think the norm is anywhere between 10-24 eggs for a healthy woman. They mentioned that this happened to a patient once where she dropped 40. It won’t kill me, but it is unhealthy. They will be watching me like a hawk to try to avoid that.
They also did a mock implantation to make sure they could get a catheter up into my uterus with no problems. (When they do it for real, they will use the catheter to implant our embryos.) They injected some solution up there and watched to see what happened, making sure nothing fell out and such. It went beautifully with no problems. It was good to know what it felt like and what to expect. It was very quick. It only took about 5 minutes. Granted, when they are actually injecting the real thing into me, it might take longer. It didn’t hurt at all. They used other equipment that was pretty uncomfortable. (Think of a pap smear on steroids ladies.) I remembered my Bradley Method training, and Chris was right there next to me and helped me remember my breathing, and as soon as I relaxed a little bit, it was totally not a big deal. That will probably help with the actual implantation too – being as relaxed as possible, so it is easier for the doctors to do what they need to do. I am going to try to remember that. I have very mild cramps now that it is over. Hardly even worth mentioning, they are that mild. I feel perfectly normal otherwise.
There is maybe one more blood test they might do on me, but otherwise I am done until we are ready to get going with the injections and implantation. I wanted to do this – to get the pre-screening stuff done early so we can just relax and move forward with the real deal when we are ready for it. We won’t be in a position down the road where we are ready, but we have months of work to do before we can get started.
This is so exciting! We have both had big goofy smiles on our faces this morning. It is awesome when you hear you are good at something, and also, again the confirmation that this is not the end of our story is such a comfort. I wore the necklace that Chris and Noah got me for Mother’s Day last year through the whole thing. I wanted a little piece of him there with me, along with the burning hope that there will be Mother’s Days to come in the future. So, here we go! It is on its way.
Wednesday, November 11, 2009
In order to prevent our next children from having MCADD like Noah did, we have to do what is called a PGD test (a testing procedure called Pre-Implantation Genetic Diagnosis). After sperm and egg meet, cells start rapidly dividing until it becomes a fully fledged embryo. Specialists within the field of embryology have become adept at watching an embryo as it divides, and when it gets to about 8 cells big, they can suck one of the cells off, and test it to look for genetic disorders. They can test for a panel of things and can even tell the sex of the baby at that point (granted, unless you have a medical reason for knowing the sex – your genetic disorder is specific to either girls or boys for example – they won’t tell you). It is pretty amazing stuff. Most fertility clinics contract out to large labs to do this work rather than hire someone in house to do it. It is just too expensive to have someone work on site. So, Chris has done a good job of calling these labs and talk to them about their process. Doctor #3 uses the lab that pioneered the PGD test. Also, for some reason, doctor #4 has a policy where they freeze the embryo after doing the PGD test. Freezing and thawing an embryo decreases the success rate. It is, of course, our goal to be as successful as possible at getting pregnant. Doctor #3 doesn’t freeze the embryo after running the PGD test. They want to do a “fresh embryo transfer” (no freezing) because that gives the best odds. Another selling point is that Doctor #3’s main office in Denver (where egg retrieval and implantation will take place) is right next door to the Children’s Hospital. The two organizations talk to one another regularly, and it is our wish to donate the sick embryos to the genetics lab there to help further their research. So, without a doubt, in our situation Doctor #3 is the best choice for us.
I called and got us all set up today. They are going to start building the PGD test. They are going to build the probe (as they call it) specific to us and our genetic issue. Chris said that they do it via a cheek swab that we send off to them. It will take three months. This doctor will not do the egg retrieval/fertilization part until we have the probe built and done, so we have a few months to relax, knowing we are moving forward, but still giving plenty of time to continue all of the work we are doing on ourselves (counseling, grief groups, losing weight from my pregnancy with Noah, and getting my hormones back in order.) I am loving that plan.
I have also decided to trust what everyone is telling me about how the finances of this really are going to be ok and taken care of (again, fundraising friends, thank you so much!) and so I have signed on with my insurance through my work rather that going on Chris’s. Doing the math on it, in order for me to be on Chris’s insurance, it would cost us $500 a month. After having the baby, it would cost $650 a month. And chances are, they wouldn’t cover a penny of the infertility. Frankly, I would rather have the cash. My insurance for me at my work is cheap, and the coverage (except for infertility stuff) is pretty awesome.
I am such a planner. Having everything up in the air for so long was really hard. Just knowing that there is a plan in place, and we are working towards something is comforting to me. I need that. The future is hopeful. This isn’t the end of my story. Just the beginning in fact.
Saturday, November 7, 2009
Then, the other day as I was getting ready for work, I realized that if I want an honest opinion of what this whole process should look like, I need to talk to other women who have been through it. They are not bound to honor their doctors. It is just their own opinions and experiences. Problem is, I don’t know anybody that has done this. Then, I remembered an old co-worker who did it successfully, so I reached out to her. I also talked to my minister to see if anyone in my church has done it that would talk to me. I found success on all ends. I have had some awesome conversations this week and have finally found the answers I was looking for.
Before I proceed with my findings and conclusions, let me just say that I really learned something from this. When facing a huge medical procedure, illness, whatever, I learned that part of doing your homework and getting second opinions from other doctors and such, is that you also need to talk to others going through it. We are the ones that actually take the drugs they prescribe. We are the ones that live through the recovery time. Those are the honest opinions that you need (in addition to what your doctors tell you). There are always people that have gone before you, researched their options like crazy, lived through the choices they made, and then have good feedback on things that would absolutely recommend or do differently next time. (This is as much a reminder to myself as it is preaching at all of you!!)
So, here’s what I know now after having talked to some really fabulous women:
The drugs they put you on are no picnic. I am referring to the injectable hormones you must have to do the egg retrieval and implantation. The consensus was that you pretty much feel like you have PMS, and that part of it isn’t so bad. The issue is the longer term effects it can have on you if you go with a doctor who is too cavalier about prescribing them. If you can avoid being on them for round after round, do it. Think about the women who go through menopause who take hormone replacement therapy and get breast cancer. This is kind of the same thing (I have some calls out to a couple of OB’s to get more official opinions on this). But, you do put yourself at risk for ovarian problems down the road the longer you subject yourself to this level of external hormones. A good fertility doctor will be incredibly anal about how much they put in you and for how long.
Also, another great piece of advice I got was that your overall success with getting pregnant has less to do with the doctor, and more to do with the embryologist. They need to be interviewed as well. Those are the guys who actually create your babies, for goodness sakes! Get a feel for their process. They are usually hidden in the lab, so they are not usually in on the introductions when you go screen doctors, but definitely ask to meet them and ask questions.
That said, those of us living in the Colorado Springs area have a few options to consider when choosing a doctor to do this (and, to prevent being sued for slander, I am omitting names. If you want to know who I am referring to here, shoot me an email or give me a call):
Doctor #1: Overwhelmingly negative feedback on this guy. There are plenty of women in the area that have used him and don’t like him. He is tricky because he does monthly free seminars on fertility in town and he does them well. He is extremely personable, and gives a good sales pitch. He very much runs his clinic like a business, and there are all sorts of incentives to save money (come to his seminar and he knocks $1,000 off the price of treatment for example), so it is easy to get sucked in. But, this is the guy that told me (a completely fertile woman) that I need to do three rounds of egg retrieval. That is 3 months of the hormone injections, which as I mentioned earlier is very dangerous to my long term health. The comment that I heard that I felt was very compelling was “he is not as medically cautious versus medically aggressive to get the result.” Enough said.
Doctor #2: Up until just recently, doctor #1 and this guy were the only two in town that do this sort of work. He was the golden boy between the two. I heard good and bad things about him. I hear that he has quite an ego on him. I haven’t seen him. I do have an appointment with him to check him out, and just from being on the phone with his staff – not so nice. One of the women I talked to used him and had a negative experience. I won’t go into details, but I will say the guy kind of screwed up on her. She left him and went to another doctor to complete her treatment. I am strongly considering cancelling my appointment because I think there is better than him here. Obviously, because he has been dethroned from being the top dog in town by doctor #3.
Doctor #3: This is actually a collection of doctors. These guys are new in town. They are a satellite office of a huge group up in Denver that is very well respected. They had a large group of people from Colorado Springs going up to their clinic, so they decided to open an office down here to serve that population. They are not a full service shop down here. They will do all of the exams and monitoring down here, but when you do egg retrieval or your implantation, you have to go up to Denver to the main office. They are the other doctor we have seen, and they were very strict on only doing one round of egg retrieval on me. They are very conservative, and I think they wholeheartedly agree with limiting the exposure to the hormones where possible.
Doctor #4: This guy is up in Denver, but must be considered. He is the best in the country. People fly from all over the world to see this man. His two big things are that he is extremely meticulous and anal about the medications and dosages, and that he is the guy that has pioneered the art of single embryo implantation. Most doctors have told me that they will implant two embryos to give me the best possible odds. This guy would likely implant one and be successful. The only down side that I have heard about him is that his bedside manner is terrible, but he is the best. This man will get me pregnant for sure. The problem is that when you are on the drugs, you have to be monitored pretty heavily. They want you in their office for blood work and ultrasounds every other day for just under two weeks. Again, the guy is an hour away in Denver. If you have a full-time job, how on earth do you make that work?! On the financial side, he may be the best, but he costs the same as everybody else which is great.
So there you have it! I have a few more people I want to talk to, so I will likely learn more. The decisions I am facing now at the moment are:
1. I am between Doctor #3 and Doctor #4. Two great options. I need to decide soon because it will take 3 months to build the specific test we need to screen our embryos for MCADD. I can’t begin the treatment until that is done. I am not in a huge rush, but I don’t want for us to decide we are ready, and then we have months to wait before we can start. The test can be built and just sit there until we are ready. Might as well get that going now if possible. Just need to decide on a doctor!
2. I want to hear more about the long term effect of the hormones. I will have some of it in me, and I want to fully understand the risk I am taking. I am sure cancer is one of the things I would be at risk for. What else?
3. I am debating on going on Chris’s insurance next year. There is a slim chance it might pick up some of the costs of this, which are considerable. There is, of course, all kinds of language around his policy where you have to be officially infertile before they will cover anything. They define being infertile as either trying for a year, and not getting pregnant, or suffering multiple miscarriages. Neither situation is true for us. We have called and talked to tons of people who all just say “well, you can submit your bills and see what they say.” Right. You know how that will go. Is it worth the effort? We have friends raising money for us (we love you if you are reading this!!! THANK YOU!!) so we will be ok no matter what. Just another thing to consider and maybe try. Chris’s insurance is EXPENSIVE, so there is that too.
Thanks for reading, and this is an open invitation for thoughts and advice if you have any.
Sunday, November 1, 2009
You know, it’s funny. Back in the day when I would hear about others going through this sort of tragedy, and I would try it on for size and think about what I would or wouldn’t do, I had definite ideas on how life would be. Now that I am actually living it, none of the things that I thought I would do actually sound good. The opposite is really what I want. I thought I would pretty much give up on having kids. I thought people that went ahead so soon were callous and trying to replace the child that was lost. That couldn’t be further from the truth. The fact is that being a parent was so unbelievably awesome, that I can’t imagine not doing it again. Noah was an amazing person. We love him deeply. There will never be another child quite like him. What we learned is that having a child and the love you feel for them is the greatest of all the human experiences. How can we miss out on that?
Furthermore, there are two needs in this situation that must be kept separate. One is our love for Noah. Second is our desire to grow our family. Those are two very different feelings and needs. Also, for those of you out there that have multiple children, when you decided to have your next child, it wasn’t to replace the one you already had. It was for the love of your family.
I am and have always been pretty in tune with myself both physically and emotionally, and I can promise you that I am not going to do anything that we are not ready for. I have had a pretty rotten last few weeks, so I can’t imagine pumping myself full of hormones right now. I can, however, do research so that when I am ready I know what we are doing. I can get the lab we choose going on building the probe that will test our embryos for MCADD. It takes three months to complete and can just sit there until we are ready to use it. All of this is far more comfortable taking baby steps. The doctors we have talked to so far have been pretty amazed at us and how slow and methodical we are being. Most of their patients want to get pregnant as soon as possible thank-you-very-much. We are one of the rare ones that are going one small step at a time.
So, the timing isn’t set, but it helps tremendously as we plug along and get reaffirmed over and over again that this tragedy is not the end of the road for us. At first that was the initial slam right in the face 1. we LOVED being parents and our son is gone, and 2. we don’t know that we can have healthy children. To hear over and over again that #2 is not true in the slightest is just the best thing in the world.
Chris and I are in the process of researching doctors, methods, embryologists and a whole assortment of issues concerning how you do this. Some things we have learned so far:
1. This is a profit driven part of the medical community. These are elective medical procedures so some of these guys tend to be used car salesmen of sorts in how they manage their offices. That is a little bit tough to wrap your brain around. I know this is a business to them, but this is my family. My children. I am trying to get into the flow of it, and learn to play the game. Man, I wish I paid better attention in high school biology. It would certainly make this whole thing easier in terms of learning what is involved quicker which helps lead to knowing what questions to ask, and what I should be fighting for.
2. They are not necessarily the happiest of places. These miracle workers are making couple’s dreams come true, yes, but at the same time, no one really comes here joyfully. There is an air of desperation and defeat. The typical clientele has come here because either they have been trying to get pregnant for a very long time and can’t, and meanwhile has watched all of their friends and relatives get pregnant around them. Or there are others like us that have suffered devastating losses through either multiple miscarriages, or loss of actual children, again, while watching their friends and relatives do it so easily. I don’t envy these guys and the work they do. It is incredible what modern science can accomplish, but holy cow, the emotional side of this is pretty profound.
3. Everyone has a different philosophy on how it should be done. We are currently stuck in analysis paralysis. We have no idea what’s the best way to go. We have talked to two different doctors, and both have completely different viewpoints on what we should be doing:
Doctor #1 – He takes into consideration our long term goals as a family, and is aggressive about taking out enough eggs to create enough embryos so that we have enough to account for at least 25% of them being sick, others that would be immature and not be suitable for implantation, others that would die off when subjected to the genetic testing, etc, so that we end up with enough to get me pregnant this time, and another time in the future if we so choose. I would be subjected to about 3 rounds of egg retrieval, or 3 months of treatment. That means 3 months of the hormone injections, 3 outpatient surgical procedures to collect the eggs, lots of monitoring and being in and out of their office and such. The most expensive part of this is the collection of eggs, fertilizing them, turning them into embryos. If we go this route, then we would bear all of the worst of the cost up front, and be set up for the long haul, whatever we want for our family.
Doctor #2 – She says that she strongly suggests only doing one round of egg retrieval. She says that being on these hormone injections along with the outpatient procedure to collect the eggs is no small thing, and that it can have a severe impact on my overall mental health. Given the fact that I am grieving the loss of my son, this is something we should consider strongly. Another reason they do it this way with only one round of retrieval is that when you freeze and thaw out embryos, you lose some of the success rate. It is just hard on them to weather it. Some will not survive it, and some will not be as good when implanted. The best way is if you can avoid that whole process entirely and implant them when they are fresh. If there are any leftover, then they will freeze them, but with the understanding that they will not be as good after having been frozen. There are, to date, no tests showing that it causes any problems with the children later down the road. It is just during implantation that you see problems with survival.
There is a third doctor in town that we have yet to consult. He is by far the most expensive (from what we have heard). We need to make an appointment to go talk to him and see what his thing is. I am scared he will have a completely different viewpoint that the other two doctors, which would make this whole thing even more confusing.
4. No doctor is willing to say any disparaging comments towards another doctor. So, crap. Now what do we do? We have made connections with some really great doctors throughout the course of having Noah, but no one will say anything about who is good or, more importantly, who is bad in this whole thing.
The learning process is ongoing. I will feel a lot better about life in general when we have a plan. This not knowing stuff is really eating at me. I have been told by these doctors that we can’t implant an embryo until it has been a full six months since Noah was born to give my uterus enough time to recover, and to get my hormones back on track, which will be January, so we do have some time. Any thoughts on this? I’d love to hear it.
On June 26, 2009, after a wonderful pregnancy, I gave birth to a beautiful baby boy whom we named Noah. He was a joy. He was beautiful and perfect and we were just beside ourselves with how amazing parenthood was. We had waited seven years to have a baby. Why? Because we wanted to. We enjoyed having life be all about us for a very long while. Once baby fever hit, and Noah arrived, we just couldn't believe we had denied ourselves this kind of love for so long.
Suddenly and unexpectedly, on the evening of Noah's fourth day of life, he passed away. We had no idea what had just happened. The day after he passed, we learned that he suffered from a very rare genetic metabolic disorder called MCADD. The symptoms were very subtle - he had been seen by at least four doctors, and countless other nurses, lactation experts, and others within the medical community during his four days of life and no one saw a thing. From everyone's examinations, we had a perfectly healthy and normal baby boy.
We have since been through genetic counseling, and have learned that both Chris and I are carriers of genetic defect, and therefore have a 25% chance of creating another sick child. We have a 50% chance of creating a child that is a carrier of the illness, and a 25% chance that we end up with a child that has no incidence of MCADD whatsoever. To help guarantee that we do not suffer this agony again, we are pursuing in vitro fertilization. They can test the embryos before they are implanted to tell which ones are the healthy ones and which ones are not. This whole journey learning about the world of infertility is stressful, confusing, invasive, expensive, exciting, scary, and overwhelming, but worth it. I am learning a lot and have a lot of thoughts and emotions to process through the whole thing. This blog serves as an outlet for all of the above.
At the end of the day, it all started with Noah, and how he showed Chris and I a new kind of love that we never even knew existed. We are carrying it forward to his future siblings. Come join in this amazing journey with us.