Tuesday, June 13, 2017

My Biggest Struggle {ISO and HDN Explained}

{Alternative title: So, what was really wrong with Lucas?!}

I'm linking up for the very first time with Momfessionals for Show and Tell Tuesday! This week's topic is "The struggle is real" (story of my life!). I figured, since people are still asking me what all happened with Lucas last year, I might as well share that as my "struggle." Go big or go home, right?! 

I also wanted to write this post because since Lucas was born, I have found a Facebook group (there are Facebook groups for everything these days, aren't there?!) with 760 ladies from all over the world  who suffer from the same condition as me. I have learned so much from this group and wanted to share with anyone who might also be going through this. There is hardly anything on the internet about this whole situation, so if someone happens to Google "isoimmunization in pregnancy" and finds this, I hope I can help them! (Also, the Facebook group is secret, but if you have ISO, please please message me and I can get you added!) 

Warning: this is really long and full of lots of medical information, and I realize that's not for everyone. Feel free to skip this post if you're not into it! :)

Ok, first: What is my condition?

I have something called Isoimmunization, or ISO (yes like "in search of" haha!). This is basically what happened to me: because I have a negative blood type, when I gave birth to Ella, somehow her positive blood crossed over and mixed with my negative blood. My body saw this positive blood as a foreign antigen and developed antibodies to fight it. Obviously it was fine to do this after Ella was born, because she was already out of my body...but then when I became pregnant with Lucas (who also has a positive blood type), my body saw his red blood cells as foreign and amped up to fight them off.

About Rhogam:
This sort of thing is supposed to be prevented with the Rhogam shot. Rhogam is given to all pregnant women who have a negative blood type at 28 weeks pregnant and then right after delivery. But Rhogam is kind of like a vaccine...and sometimes vaccines don't work. There is a 1% chance of the Rhogam not working, and guess what? I'm in that *lucky* 1%. Yay me.

So now I that I am sensitized, there is no point for me to ever have a Rhogam shot again. Kind of like if you get a chicken pox vaccine and then get the chicken pox...why would you go back and get the vaccine again?! This is something that I can't cure or will go away over time (it actually gets worse, but more on that later). These antibodies will stay in my system forever, and continue to fight off any sort of "foreign" protein (aka, my kids' red blood cells).

There are all sorts of antibodies you can get when you are sensitized. You can see a full list here. (That whole website was developed by one of the girls in my ISO Facebook group and has a whole wealth of information on it!) I have Anti-D and Anti-C. Some antibodies are worse than others. Anti-C is one of the more mild antibodies, but Anti-D is actually one of the most aggressive ones out there.

Antibodies are measured by something called a titer. Your titer level tells you how much of the antibody is in your blood. It is a ratio, which tells how many times your blood would need to be diluted to totally rid you of the antibodies. For example, since mine started as 1:4, my blood would need 4 dilutions to get rid of my antibodies. The higher your titers, the more likely is it for baby to be affected. Critical titers are considered 1:16 for Anti-D and Anti-C (for some other antibodies critical is 1:8), but my OB considered 1:8 to be critical. Once you reach critical, titers don't really mean that much anymore, and basically your antibodies will affect your baby in some way. There are moms in my ISO group who had major complications with titers of 1:2 and then some moms who had less issues than I did with titers of 1:256. It just kind of depends on which antibody you have and how aggressive it is.

MFM and MCA Scans:
Ok, so my titers hit 1:8 at 32 weeks pregnant. When they checked again to make sure at 34 weeks, my titer for Anti-D (the really bad one) was up to 1:16. So they immediately sent me to the Maternal Fetal Medicine (MFM) office that is affiliated with our hospital. MFMs are basically high risk OBs: they deal with multiples, chance of birth defects, moms with diabetes...and me of course with isoimmunization! I wrote a little about my first appointment with the MFM here. The technician at the MFM office did a very thorough ultrasound called an MCA Scan. MCA scans are used to detect fetal anemia, which is caused by my antibodies attacking Lucas's red blood cells, and thus potentially causing him to be anemic. They do this by measuring the blood flow of a certain artery to the brain. This must be done at a very specific angle and some technicians are better/more accurate at doing this than others. The MFM also checked to make sure the technician was accurate...and then usually they will take the highest number out of 3 or 4 tries. During a MCA scan, they get a PSV value (Peak Systolic Value, or how fast that blood is going into baby's brain). From this, they then calculate a Multiples of the Median (MoM) value. Lots of math that I don't understand going on here, but a MoM of 1 is normal; above 1.5 is considered anemic. During this first MFM visit and scan, Lucas's MoM was right at 1, so I was very relieved!

{Lucas at his very first MCA scan!}

To follow up, the MFM wanted me back in 2 weeks for another MCA scan. He also wanted to induce me at 38 weeks because MCA scans have been proven to be inaccurate after 37/38 weeks (some even say after 35 weeks). I went back 2 weeks later for another MCA scan, and this time Lucas's MoM was .7! Even lower, which was so awesome! The MFM joked about how big he was going to be (Lucas was estimated to be over 8 pounds!) and how he may just have to spend a day or 2 under those bill lights, but everything was going to be just fine with him. Oh, how I wish that had been the case!

So now...what was wrong with Lucas?

Short answer: He had Hemolytic Disease of the Newborn.

Long answer (and this is really long, sorry!):

I had a really standard induction and delivery, and Lucas was born on May 19, 2016 perfectly healthy, with great APGAR scores and everything. You can read about Lucas's birth here.

Direct Coombs Test
Ok, so once we recovered from birth and were moved from the delivery room to our family care room, the nurses did a Direct Coombs test on Lucas. The purpose of a Direct Coombs test is to see if there are antibodies already bound to and attacking Lucas's red blood cells. Turns out, not only was he Coombs positive, he was Direct Coombs +3. What this meant was 1) yes, my antibodies had bound to and were attacking Lucas's red blood cells, and 2) the +3 meant that 75% of his red blood cells were being attacked by my antibodies (there's 25% for each +number, if that makes any DC +1 would mean 25% of baby's red blood cells being attacked; DC +2 means 50% of their red blood cells are being attacked...). So that was really bad.

They also did a bilirubin test and it was I want to say a 6? (I totally should have kept a journal or notebook recording all of these numbers!) There are several charts around the internet (this one is pretty standard), but 6 is pretty high for an hours old baby, so they put him under bill lights almost immediately. Looking back at pictures, he does look really jaundiced. Poor guy! Anyway, his bilirubin was so high because of my antibodies attacking his red blood cells (bilirubin is produced when the liver breaks down old red blood cells...and since 75% of his red blood cells were ruined from me, his liver was working pretty hard!).

{You can see how yellow Lucas looks next the the rest of our "normal" skin tones here. He was about 5/6 hours old here}

Every day we waited for his bilirubin to go down, but it kept going up. And up. And up. It was the most frustrating thing EVER! I believe the highest it was was 17.9. At around 20, they start talking about going to the NICU and doing blood transfusions, because if it gets to be that high and nothing is done, the baby could have brain damage. But luckily, Lucas's never got that high.

We wanted him to poop as much as possible, because bilirubin is released from the body through bile. So I was feeding him around the clock, then giving him formula, and then feeding him whatever I had pumped (and then pumping more for the next feeding). The whole process took about 90 minutes, so by the time I was done with everything, I had maybe an hour before I had to do it all over again. Even in the middle of the night. I was SO determined to get out of the hospital that I set my alarm to wake up every 3 hours so Lucas could poop out alllllll that bilirubin!

{we added a third light and aluminum foil to get the lights to reflect even more around day 2 or 3)

Lucas's bilirubin started to plateau around day 4 (May 23), so they decided to try him without the bili lights. What I didn't know was that bilirubin tends to peak in ISO babies around days 4-6. So guess what happened when we took him off the lights? Yep, it went from I think like 13 or 14 all the way back up to 17.7 (second highest it had ever been). That is when I had to leave him in the hospital, because they said it might be a while before he was able to be without the bili lights. (Side note: Several people asked me why would couldn't just use a bili blanket at home. Unfortunately, we couldn't use one of those because his jaundice was just too severe for that.)

Hemoglobin and Hematocrit
When Lucas was 6 days old (still in the hospital, this is now day after I had left, May 25), some new terms entered my vocabulary:

*hemoglobin: a protein in red blood cells that carries oxygen. Low hemoglobin means you are anemic.
*hematocrit: the volume percentage of red blood cells in your blood.

The doctors had been checking Lucas's hemoglobin and hematocrit (H&H) regularly, and had told me if his hematocrit fell below 20%, he would be going to the NICU for a blood transfusion ASAP. When I had left him, the last H&H check said his hematocrit was 21 or 23 (can't remember exactly) so I knew it may be a real possibility that Lucas was going to have to go to the NICU.

Sure enough, at 6 days old, that Wednesday morning, I got the bad news that Lucas's hematocrit was 19% and his hemoglobin was a scary 6 (normal is like 12-18). So off Mr. Lucas went to the NICU with me hysterically crying the entire day.

Blood Transfusions
There are 3 different kinds of transfusions that they can do in this situation: first is an exchange transfusion, which is when they take about 90% of your blood out and replace it with new blood. Another is a red blood cell transfusion.
And then in the middle of both of those is something called IVIG (intravenous immunoglobulin). Thankfully, Lucas just needed the simple RBC (red blood cell) transfusion, but they were talking about potentially doing IVIG there for a little bit.

{During his first blood transfusion}

After his first transfusion, they were able to get his hematocrit up to like 34/35%, which is good (normal is around 45%), but they wanted to get it even higher, since it would probably drop. So they did another transfusion right after the first one, in the middle of the night.
After that second transfusion, his H&H were both at good levels, so we focused on getting that jaundice under control, too.
Lucas stayed under the bili lights in the NICU for another 4 days (so at this point, he had been under the bili lights for 10 days total) before his jaundice levels started to stabilize and even decline a little bit. Since we were past the typical day 4 peak for jaundice in ISO babies, they decided to take him off the lights. But this time, instead of taking him off ALL 3 lights (oh and a blanket of lights under him) at once, the removed one light at a time. I think this helped him so much more, since it wasn't as much of a shock to his system, like removing all of the lights at once had been.

{May 30}

Thankfully, his bilirubin didn't skyrocket up again, and his H&H levels weren't dropping drastically, so we finally got to bring him home after the longest 12 days of my life!

{May 31}

Post-hospital Follow-up
 Lucas's journey didn't end once we got released from the NICU. We still needed to get his bilirubin and H&H checked regularly to make sure that his jaundice was under control and he wasn't becoming more anemic.
This is SO crucial. I've actually read about babies similar to Lucas, who ended up dying because the parents didn't know the baby needed to be monitored after they were released from the hospital. I can't even imagine!!!
ISO babies tend to develop delayed onset anemia, usually when they are 3-12 weeks old. So it is VITAL that an ISO baby's hemoglobin get checked until they are at least 12 weeks old. If baby is anemic and does not get treated, it could be deadly.

{Quick note about iron supplements: If you or I became anemic, the first thing the doctor would probably recommend would be an iron supplement. A lot of people were asking why I couldn't just give Lucas iron supplements? This could be REALLY dangerous for him, because he was anemic due to red blood cell destruction, not an iron deficiency. So if I had given him an extra iron supplement, he could have had an iron overdose, which would have been really bad.}

Looking back through his medical chart, here's what the next 3 weeks looked like for him, hemoglobin-wise:
-June 2: 11.4 (good!) His bilirubin at this point was 5.1, which was the lowest number I had ever seen for him! So we stopped checking his bili at this point.
-June 10: 9.3 (starting to get a little nervous)
-June 23: 7.9 (yikes!!)

{Ella's "job" at all of these check-ups was to hold a warming packet on Lucas's heel, so he would bleed extra well when the nurses did the heel pricks!}

So in between those 3 visits, we also went to the lab to get his hemoglobin checked a few times, too. But for some reason, I can't pull up those lab results. But they basically followed the same trend downward that we were seeing when we had his hemoglobin checked at the pediatrician's office.

Ok, so on June 23, after the pediatrician found his hemoglobin to be 7.9, she immediately sent us to the lab to double check, as well as check his hematocrit. The lab found his hemoglobin was actually even lower, 7.1, and his hematocrit was also super low at 20.4. Once the pediatrician got these results, she called me right away and said Lucas would need to go in for a blood transfusion immediately. She pulled a bunch of strings and got him in first thing the next morning at the St. Jude Affiliate Clinic. I know when a lot of people hear St. Jude, they think of cancer, but they actually do a TON of blood disease treatments there too. They told me just as many kids come there for blood transfusions and blood disorders (i.e. sickle cell anemia, hemophilia, etc.) as those who come for chemo!

{This was Lucas on the day his hemoglobin hit 7.1. You can see how pale he is!}

The people at St. Jude are absolutely phenomenal when it comes to patient care and explaining everything in easy to understand terms. Lucas's hematologist sat down with me before his transfusion (she had come in early just to oversee his transfusion!) and talked to me all about reticulocytes (retic).   The retic count tells you how quickly your body is making new red blood cells. When he was discharged from the NICU, his retic was .2, which is pretty much the lowest it can possibly be. Basically, Lucas was not making his own red blood cells very quickly. The hematologist explained that they wanted to run labs one more time to check his retic, because it would determine how much blood they would give him in the transfusion. If they gave him too much blood, it would suppress his retic and tell his body to stop making new red blood cells (because he was just getting them with no effort from his own body through this transfusion!). So they wanted to give him just the right amount that would help him to not be anemic, but also help his retic stay high, so he could keep making red blood cells on his own. (FYI, his retic was 1.2 pre-transfusion, so they were happy it had gone up, but he definitely still needed that transfusion).

{During his transfusion at St. Jude}

Follow up care at St. Jude
After Lucas's transfusion at St. Jude, we went back there regularly to check his H&H, as well as his retic. A week after the transfusion, his hemoglobin was 10.8, his hematocrit was 30.4 and his retic was 1.2. The retic had stayed the same as before the transfusion, as they predicted, because by giving him blood, his body didn't need to do anything more for new red blood cells. This is why they couldn't just keep giving him transfusion after transfusion, even though his hemoglobin was still kind of low. They wanted to give him time to make his own red blood cells.

{at one of our many check-ups at St. Jude}

The next week, his hemoglobin was 9.6, his hematocrit was 27.4 and his retic was 1.1. I started getting really worried, but they reassured me that they thought it might take another week for that retic to kick in and get going making those red blood cells.
And they were right! A week later, Lucas's retic was up to 3.18!!! Woo hoo! He was finally getting rid of my nasty antibodies all by himself, without any help from other people's blood!
His H&H were continuing to drop, but since his retic was so high and he didn't have any other symptoms of being anemic, they held off on another transfusion.

We continued to get Lucas monitored until August, when he was 3 months old. At that point, his hemoglobin was a normal level (11) and his retic was good (1.8), so he was able to be released from hematology! It was another happy day, except I do miss those wonderful people at St. Jude!

{Lucas's last visit at St. Jude...I think Ella is still missing all the fab toys they had!} what?

Lucas is a totally normal 12 month old. He does still get his hemoglobin checked at some pediatrician well visits (just like any other healthy kid would), but we are all done with the heel pricks, IVs, transfusions, hematologists, all of that! You would never know he went through any of this by looking at him, and he will have no long-term effects from any of the treatments he received.

As far as more kids, the bad news is that each pregnancy after this will only be worse. I just had my titers checked and they've already gone up from 1:16 to 1:64, which doesn't really mean anything since once you've reached critical, it is just always critical no matter the level. But it still freaked me out that they went up; I know that can't be good. I know so many ladies in my ISO Facebook group have gone through much, much worse to have kids and I am so lucky that what we went through with Lucas was super minor compared to some.
We do have a few option if we want more kids. They are supposedly coming out with a pill in the next 4-5 years, that will help block antibodies from attacking baby in the womb! I am really optimistic about this. Another option is to get Trav tested to see if he is heterozygous or homozygous for the C and D antigens...if he is hereto, that means we have a 50% chance of having a negative blood baby, and we could do an expensive version of IVF to make sure we get a negative-blood embryo. So we'll see. We just maaaay be done having kids, but never say never! 😉

Well, if you read all of that, WOW! I know it was a lot!!! But please please message me if you still have questions or you have ISO and want to join the Facebook group!


  1. What a little medical miracle!!! That is a very real struggle and I appreciate you sharing it!! My daughter had a misdiagnosed birth defect, so I know the stress and anguish that comes along with having a sick kiddo and that constant fear that sticks with you even after they are "better". I really appreciated reading this (and learning more about ISO!)

  2. You all went through so much. I am so, so happy that you have a beautiful healthy baby boy!