"Unfortunately,
something showed up in your blood work."
Wait...what blood work?
"I'm not a
specialist, so I cannot explain this to you, but you tested positive for
something called anti-E."
Anti-what?
"I'm sorry that
I cannot tell you anything else. We need to get you in right away to see our
prenatal specialist. If you stop at the desk on your way out, they will get you
scheduled for a counseling session. Your husband should be with you."
Wait, hold your horses...counseling? My heart dropped. Something is wrong with the
baby? How do they know that already? I'm only 9 weeks along!!
With a sinking heart
I managed to mumble: "Anti-what?"
"Anti-E. You
can do some research on it if you want to, but make sure you go to reputable
sources online."
"You can't tell
me anything?"
"No, you really
need to talk to our high-risk specialist. I do not really understand the
condition myself. We will make you an appointment for next week."
Counseling. High
Risk. Anti-E. Is there a pro-E? What the heck is an E? Who tells you to google
a "condition?" I had to wait a week to get in to see the specialist,
and in the mean time we did a bit of research into what I now know is a pretty rare
condition. I have gone back and forth on whether or not to share this with more
people than just immediate family, not wanting to create more drama than there
needed to be...but in the long run, I decided that I covet the prayers of those
of you, my friends and family, who will stand with Sam and I throughout this
pregnancy. Since we live far away from most of you, we decided that it
would be a good idea to write it out here, to let you read it "from the
source."
What it is:
Everyone, you, me,
your grandmother, your great-nephew...we all have a variety of proteins on our
red blood cells that the medical community labels with letters: A, B, C, D,
E...Most people would never know, and most blood is never tested for these
proteins. They do not usually cause any problem. The Rh factor associated with
pregnancy is the most well known issue regarding one of these proteins.
What happened in my
case is that Oliver must have gotten the protein "E" from his dad,
and I am E-negative (meaning that I do not have the E protein in my blood).
Throughout the course of the pregnancy, there was some mixing of Oliver's blood
and my blood. There always is a certain amount of mixing, but in our case, the
amount was greater - which could have been due to a somewhat weaker placenta,
or perhaps the c-section...they are not sure how it happened. When my red blood
cells (without an E) came in contact with Oliver's red blood cells (with an E),
my immune system basically freaked out. It viewed his blood as
"foreign" and created an antigen to fight against the E. Which means
that now my blood contains "Anti-E" antigens.
What this means:
For me: The level of the antigens in my blood
is low, which is good. But, I now am supposed to wear a medical bracelet at all times,
alerting medical professionals (in case of emergency) that if I should need a
blood transfusion, it has to be specially tested to make sure that it does not
have the E protein - or my body will fight it, reject it, and create more and more of these anti-E antigens.
For the baby: If our baby does not have the E
protein, there should be no problems. Which is my prayer. However, since Oliver
had the E, which means Sam has the E, there is a high possibility that this
baby will too. The way they will monitor this is by testing my blood every 4
weeks for the first half of the pregnancy, and every 2 weeks for the second
half. If the levels of this antigen in my blood increase, they will assume that the baby has the E
protein, and my body is "fighting" against it again. As long as the
level of the antigen in my blood does not hit what they deem a
"critical" level, the pregnancy should be able to carry on as
"normal," but with extra
monitoring, blood tests, ultrasounds, non-stress tests, etc. If the pregnancy
goes full term with no major problems, the baby could be very jaundiced and
slightly anemic when he/she arrives, possibly requiring a few extra days in the
hospital or regular (daily) checkups for the first couple of weeks.
If the antigens in
my blood reach a critical level (which would mean that a sizeable amount of my
anti-E antigens would pass to the baby) then my blood would attack and kill the
baby's good red blood cells - causing him or her to become severely anemic. If
it happens late enough in the pregnancy, they will take the baby early (even
risking a stay in the NICU) because it would be safer outside than in. Further
testing would be necessary to see the baby's lung and liver development before
that move. The baby could need a blood transfusion upon arrival (or multiple
transfusions over the course of several months) , and likely an extended stay
in the NICU. I would be referred to an area hospital with a good NICU if my
doctor feels as though our little tyke will need that extra care.
Worst case scenario:
If my levels are critical too early and the baby could not be safely taken out,
more invasive testing (amniocentesis, etc.) would take place. The anemia in the baby could become so severe
that it would cause his or her little heart to overload - it is a fatal
condition. At that point I would then be transferred to another hospital for
the baby to undergo a cord-blood transfusion (A blood transfusion into the
umbilical cord while the baby is still in the womb). This is a very risky
procedure, but because the anemia would be fatal, they would take the risks in
an attempt to save the baby.
What you can do:
Pray with us. Pray
that God would either expel the antigens in my blood all-together (miraculous
healing), that the baby would not have the E-protein and we would have no
issues, or that the baby would be miraculously protected from my anti-E
antigens and that none would pass to this precious little life and destroy his
or her healthy blood!
Pray for Sam and
I...it is not easy knowing that your red blood cells could be fighting or
hurting the unborn child inside of you. It's scary. Things like amniocentesis
and cord-blood transfusions and NICU stays are scary. On a petty level, I don't
like the thought of blood draws every 2-4 weeks or more for the entire pregnancy - so many pokes! And I know that I will be anxiously answering
the phone listening to the results each time. So, pray for peace. To walk this
journey, to trust our God (that I know is bigger, greater, and mightier than
any diagnosis), and to have the grace that we will need every step of the way.
It's a condition that I will have for the rest of my life, and depending on how
this pregnancy goes, may dictate whether or not we can have more children in
the future.
Thank you for
standing with us, and for praying for this precious new little member of our
family. I will be seeing the high-risk specialist throughout the remainder of
this pregnancy, and she will be monitoring me (and the baby) very closely. My
recent blood work has been very encouraging - the levels of the antigen in my
blood have not risen so far, actually they appeared somewhat lower when they
were tested in early January. Yay God!! :) We are hoping and praying that it
stays that way throughout the remainder of the pregnancy.
Trusting that God
will protect this precious little life inside of me,
-Bethany
Just discovered your blog with this post... Praying with you both and for the little one!
ReplyDeleteThank you! :) It means a lot to have so many people standing with us in prayer!
DeleteYou as always are in my prayers! God is on the scene and will be with you every step of the way as you, Sam, Oliver and little one walk this journey together. The Song :HE LOVES US OH HOW HE LOVES US HOW HOW HE LOVES US...keeps going through my mind as I pray and think of you all!
ReplyDeleteThanks Shawna. I know that through this God is developing in me a different (deeper? greater?) level of trust, and I cannot even begin to explain how thankful I am that we have Him guiding our steps! :)
DeletePraying, praying, praying, for peace, for miracles, for joy, and for a revelation of the love that God has for your family!
ReplyDeleteThanks Sarah! :)
Deleteabsolutely praying with you, Sam, Oliver, and your families. You're a courageous mom amd your faith is an anchor, I can see. Bless you and may the Lord protect each of you. ~Beckie From (friend of your mom's)
ReplyDeleteThank you, Beckie!
DeleteI am praying for you guys! Be Blessed!
ReplyDeleteThanks LeNard!
Delete