Friday the 13th...really stands up to its name!
I had another marathon ultra sound scan today...surprise, surprise, more bad news!
Jaime's kidney's are enlarged and there is too much amniotic fluid. One syndrome the Dr. is thinking might be Fryns Syndrome, but Jaime doesn't really have many obvious symptoms of it except for the enlarged kidneys. It is said to be the most common "genetic" syndrome associated with CDH. We're not sure where the genetic disorder lies, as none of us have heard of such a thing. (You can Google it for more info.)
These babies have very poor outcomes, only 14% survive and they are severely disabled. The dr. is going to do a little more research, consult her colleagues and get back to us. In the meantime, she's going to have the saved amnio cells sent out for genetic testing for Fryns Syndrome. If it's positive, there is no point in traveling out of town to deliver because the baby will not survive anyway.
While waiting for all of this to happen, I called Cincinnati to see if they had any indication of this when we were there last month. I didn't get through to a Dr. as of yet, the secretary told me to have the report from today's ultra sound sent to her. From what I have learned, this just doesn't pop up all of the sudden. There should have been subtle signs along the way indicating a problem.
After I called Cincinnati, I called Michigan. I explained everything to Jeanie (the coordinating nurse) and asked if I could come up there for a second opinion sooner than in March. She agreed, so Tom and I are going to Michigan the evening of Wednesday, Feb. 18th, for an 8:00 A.M. appointment on Thursday. We will be having another ultra sound and genetic counseling. If they find the same thing, then we will be home for delivery.
The increased amniotic fluid usually results in pre-term labor, so that's another issue we may be dealing with. Dr. Corteville confirmed that my back pain is from the increased pressure due to the extra fluid. So, I guess P.T. won't help after all.
Anyway, that's the latest on our end. We feel terrible because to look at Jaime, he looks perfect. We're so sad that the final outcome of this pregnancy might not be what we planned for.
As always, I will keep you updated along the way.
Your thoughts and prayers are much appreciated!
Love,
Sheryl
P.S. Dinner last night was at the Grove Wood Tavern in Collinwood...it was delicious! I had steak and shrimp, Tom had steak and crab cakes....mmmm. I didn't stick Tom with a needle either...YET! I was "practicing" on an orange first.
hey Jaimes family. I just found your blog. I just wanted to say that I am expecting my son, Maxton, with CDH, in about 2 weeks. We have been told so many different things. First we were told that Max was going to be a Turner's Syndrome baby (at 12 weeks) but then his CVS came back normal and a boy. Then we found out abotu the CDH. On one scan, one of Max's kidneys didn't appear to be working as well as it should, but now it is fine and has been the past couple of months. All of this to say- don't let the doctors get you down! Did they tell you what you Amniotic Fluid level was? Mine has been as high as 33 (about 3 weeks ago) and now it is back to 17.. it can be pretty painful sometimes and my left thigh has been numb almsot my whole pregnancy. Anyways, I will be thinking of you guys! Glad you are getting a second opinion!
ReplyDeleteI have to agree with Ashley (Max's Mommy). When we saw the perinatologist at Kaiser (our HMO) we were told that Kaden's kidney's were not working, that he had SUA (a two-vessel cord) and a LHR of .2! If you are being seen by someone besides the specialist that see CDH babies regularly, I would take what they tell you with a grain of salt. I know how hard it is not to worry until you get a difinitive answer, but more often than not it turns out to be okay. Kaden is COMPLETELY normal---except for the CDH. HIs kidneys are functioning great (he always has a full bladder) and he has a normal 3 vessel cord. Try and stay positive for Jaime. I will continue to keep you all in my prayers.
ReplyDeleteI'm so sorry you are having to deal with this news. I second what the other mommies said. CDH babies are often misdiagnosed with other abnormalities and then turn out to be fine. Try to hang in there and think positive. I'm glad you're getting a second opinion. Praying for you guys.
ReplyDeleteJen
I found your blog from another CDH blog, but I may have seen you on CHERUBS? Anyway, I am praying for your little one. We delivered at U of Michigan and the care there was amazing. Jeannie is awesome! Sending positive thoughts and hugs to you!
ReplyDeleteLove,
Amy, Steve, ^Faith^, and baby Miles