Sunday, September 4, 2011

Gestational Trophoblastic Disease

About a week after we learned that we lost the baby we received more shocking news. My doctor called late one night after the kids were in bed with my pathology reports and told me that I had gestational trophoblastic disease- specifically I had a partial molar pregnancy. Quite honestly as she explained it on the phone my head was spinning. And thus we've taken some time before sharing this with many people- we wanted to meet with my doctor first, go through a few rounds of testing, and just generally make sure we understood what was/is going on. And now that we've done all of these things I feel ready to share.

Basically the gestational trophoblastic disease was brought on by a genetic problem with my pregnancy. In our situation at conception the egg was allowed to be fertilized by two sperm resulting in a partial molar pregnancy. This resulted in two significant things.

The first was that our baby received too many chromosomes (69 instead of 48- two sets from Joe and one from me). This is what caused the death of our sweet little one. The doctor tells me that there is no way our baby could have survived- the defects just would have been too severe. To be honest I never expected that we would ever know the technical "why" of what caused our baby's death. This news in some ways was good to know, but it was not at all comforting in the way I thought it might be. And yet God has given me great peace about our little one- peace that our baby was simply not meant for this world- but meant for another one (a better one).

The second thing that happened was that the placenta began growing abnormal tissue (basically a benign tumor). I had surgery a few days after we learned we lost the baby and this surgery removed this abnormal tissue. If my body working naturally and the surgery together did indeed remove every bit of this tissue then there shouldn't be any additional problems and I will go on to be healthy with only a 1-2% chance that this could happen again with another pregnancy. But, if any of this abnormal tissue does remain and begins to grow then I will need further treatment (statistically there is about a 10% chance of this happening). And while the tissue is very likely to be benign the treatment would involve chemotherapy (to kill all of the tissue). There is a very small chance that the growing tissue could become cancerous (my doctor has only seen this happen once or twice in her career). My doctor determines whether there is any tissue remaining/growing by closely monitoring my HCG hormone levels. I have been having my blood tested every 10 days to monitor these levels and so far things are moving in the right direction. A few weeks ago my HCG levels were around 246 and the HCG levels from my pathology report on Friday were 140! My levels need to get to zero and then stay at zero. If my levels go down to zero quickly then I will only need to be tested for around 6 months. If they take a little longer then I will likely have to be monitored for closer to a year. If at any point my levels start to go up it would indicate that tissue is growing and that further treatment would be needed.

So, that's what's happening. To be honest it has been difficult. When we first got the news about this condition (and how it affected both me and the baby) I was sad and then quickly became quite angry. It has been such a difficult and painful summer for us on so many levels that it just felt like we couldn't get a break- that more and more just kept getting heaped on. I had at least thought the physical part of all of this was over- so to find out that it's not and to have to relive it over and over again for up to a year is just hard. For a few days I just allowed myself to be angry and honest with God (He knew anyway). To be honest I was also angry because we have been told by my doctor that it is very important that I not get pregnant again until all of this is cleared up (which could be a year- assuming no further treatment is needed). That just felt like more heartbreak over again.

And yet once again God has given me such peace about all of this. Peace that He is in control and that I can TRUST Him. This prayer from Blaise Pascal has become very powerful for me...

"I ask you neither for health nor for sickness, for life nor for death; but that you may dispose of my health and my sickness, my life and my death, for your glory...You alone know what is expedient for me; you are the sovereign master; do with me according to your will. Give to me, or take away from me, only conform my will to yours. I know but one thing, Lord, that it is good to follow you, and bad to offend you. Apart from that, I know not what is good or bad in anything. I know not which is most profitable to me, health or sickness, wealth or poverty, nor anything else in the world. That discernment is beyond the power of men or angels, and is hidden among the secrets of your Providence, which I adore, but do not seek to fathom."

That is not an "easy" prayer to pray but in it I find such truth (and in that I find comfort).

We sure would appreciate your prayers as we continue this journey. Please pray that my HCG levels would quickly go down to zero and remain there. Please pray that I wouldn't need any further treatment for this condition. But ultimately please pray that the Lord's will would be done, that He would be glorified through this journey, and that we might continue to trust Him in new ways.


Mandy said...

Oh...sweet, sweet friend. I am so sorry it has taken me a while to get back to you. I am calling you tomorrow. I just realized Brandon still has your number, and unless it has changed...I will call you. I love you, Angie...and will pray. Thanks for sharing with us.

Jill said...

Angie, my heart just hurts reading about all you are going through right now. I will be praying for you and your sweet little family.

Fitzgerald said...

Praying for you!!!