North Carolina, USA
Lisa’s NAIT story
Hi! Here is my NAIT story. Disclaimer: I am a long winded writer, so you might want to grab a cup of coffee. 😉 Pregnancy history: Pregnancy #1 early miscarriage at 5 weeks. Pregnancy #2 I was induced at 40+ weeks, baby went transverse, C-section delivery, and we had a healthy 9lb 6oz baby boy, named Jackson (2000). I am Rh negative, so I received the RhoGAM shot after my early miscarriage, at 28 weeks of pregnancy and after delivery of my 1st son.
Pregnancy #3 After early blood screening at about 8 weeks, I get a call at work from my Ob’s office to inform me that I had developed Rh antibodies (anti-D). Lucky me – I guess the RhoGAM shot has less than a 1% failure rate?! So, it was explained that my baby would be followed by Doppler ultrasound to check the blood flow through the middle cerebral artery, as a way of monitoring whether baby was becoming anemic or not. In Rh disease, maternal antibodies destroy fetal red blood cells. I had antibody screening done, I believe once a month, to see how active my antibodies were. I began with a titer of 1:4 (which is not very worrisome). From memory, I only had a couple Doppler ultrasounds because my antibody titers stayed so low. Due to the fact that I was Rh sensitized, it was decided it was best to deliver at 38 weeks. Unfortunately, I could not attempt a Vbac, as inductions are contraindicated with prior C-section delivery due to the risk of uterine rupture. I was crushed to yet again, have to let go of the dream of a vaginal delivery. (In hindsight, I see how this very well could have benefited baby#2).
Baby Ben was delivered (Nov.2002), and immediately my OB and nurses noticed bruising on the bridge of his nose and around his groin. I distinctly remember my doc’s words, “Well, I didn’t touch him there…let’s check this baby’s platelets!” I’m not sure if Ben had petechiae at birth, or if it came out just after. And you can all imagine how everything turned on a dime after that…I remember kissing Ben’s sweet chubby cheek, and then I didn’t get to see him for several hours after that. His platelet count was 39,000. He went through testing to check for ICH – ultrasound? No bleed showed. He was given two rounds of IVIG, and I was told that if his counts rebounded he could stay at this Level 2 hospital, but if he did not respond, they would have to transfer him to a level 3 hospital where they would transfuse platelets. The irony is that he had NO ANEMIA, and never even got jaundiced (which IS what we were prepared for with a known Rh sensitized pregnancy). The low platelets came out of left field as far as we were concerned.
After Ben went through various testing, the nurses finally brought him to me many hours after delivery. I was able to hold him for just a couple of minutes before they admitted him to the NICU. I will NEVER forget that feeling of having bonded with this baby for almost 9 months, only to have him swept away in the first day. Since I had a C-section, they wouldn’t even allow me down to the NICU until the following day. It was heart-breaking, and to add to the torture, I had a roommate who had her baby in the room with her. As I sat in my bed using the breast pump, and crying, I actually heard the new mother making snide remarks to her family about how the breast pump was grossing her out (she had chosen to bottle feed). Ugh! I pleaded to the nurses to change my room situation. I think after 48 hours, I was given a private room. I later wrote a letter to the hospital that they really need to do everything in their power to either partner mothers with babies in NICU as roommates, or give mothers with NICU private rooms. Knowing what I know now, the MOST IMPORTANT thing was that Ben was being given the care that he needed, and while it was difficult to be separated from my baby early on, that is a sacrifice that ensures the baby can recover under guided care, and really I learned to feel the same way about C-section deliveries. I had to “let go” of my visions of what pregnancy, delivery, and the hospital stay should look like – and just let the doctors and nurses do their job to help my baby.
Fortunately, Ben’s counts rebounded with the IVIG infusions alone. We were able to bring him home after a 5 day NICU stay.
After reading just a few NAIT stories on the NAITbabies website (which I only just discovered), I realize that we were fortunate in that my Ob knew to test my husband’s blood and mine, in order to screen for a platelet mismatch. I think we got the results at my 6 week follow-up appointment. We learned that Ben’s low platelets were the result of N.A.I.T. I just couldn’t believe that with the less than 1% failure rate of the RhoGAM shot, we had just dealt with another low percentage complication. Why were we so “special”?! And that is a question that I still often wonder. However, Stacy has just informed me that there are other Rh sensitized moms in the NAIT community. But when this happened to me, my Ob (and later my MFM) had never had a patient who was Rh sensitized, AND had a NAIT affected pregnancy. And when I later found the NAIT yahoo group, there was no one active in the group who was dealing with both. I felt like a freak of nature in a way.
We took Ben to the pediatrician for platelet checks for a while (first few weeks?) All was well. Thank goodness. When Ben was about 6 or so weeks old, he started having trouble feeding. He needed to be upright. In subsequent weeks, feeding grew more difficult and he seemed to really struggle from 2am on with sleeping. He was eventually diagnosed with silent reflux. After we moved from VA to MI, I grew more and more concerned for Ben’s delayed speech. He was evaluated by a team of educators and therapists in the county we were living in. They were fabulous. Ben was 3 at the time, but had the speech of a 2 year old. He was also found to have low muscle tone in his hands. I also strongly believe he has low tone in his mouth. (Which might have contributed to his early feeding difficulties, and why he had some speech problems and chewing/swallowing problems later on). Ben started an early intervention program, going to a preschool type setting with other kids needing speech and/or OT. I am grateful that Ben had that opportunity. While many with low tone have large motor skills affected, Ben only seemed to be dealing with fine motor skills, though I will say that his upper body was quite weak. I credit sports as also helping him develop despite his low muscle tone. The kid LOVES sports, and is now a top soccer goalie, and awesome basketball player. I’ll never forget when his Kindergarten teacher told me how his whole class clapped for him when he finally mastered scissor cutting. 🙂 And he kept the very unusual way of gripping a pencil that one Occupational Therapist suggested for him, but it works, so why change it? And now he has learned keyboarding in school, which will also be very helpful for him. Ben still sometimes demonstrates a “slow speech processing” issue…where he can be slow to verbalize a thought. But I have had him evaluated by two speech therapists, and he did not qualify for speech therapy in school. Basically, the way our school system operates here in NC, is that if the delay is not affecting the child’s school performance, they will not qualify for services. Despite this challenge, Ben (now age 12) has qualified for academically gifted services for language arts, and has also been recommended for services for Math. But like his momma, he is a slow test taker, which never allowed him to finish the tests they use to evaluate gifted math students. So he would get all the answers right that he answered…but not finish the test. Frustrating. Anyway, I mention all of this to you about Ben, because I can’t help but wonder if the delayed speech and low tone has anything to do with his NAIT birth. Or, if there was a very small brain bleed that went undetected? Or, if he developed a bleed after the ultrasound checking for an ICH? But the bottom line is that Ben is doing so well, that I guess there isn’t much point in pondering something we will probably never know the answer to.
I am not sure at what point I came to learn about how a known NAIT pregnancy would be managed. I suspect that my OB had me go back to the MFM in Washington, D.C., who had done my Doppler ultrasounds to monitor for signs of anemia in Ben. But I always knew that I wanted to have a third child, so I’m sure I started digging as soon as I found out about the NAIT diagnosis.
Fast forward to 2005. We had moved from VA to MI. I knew that being pregnant with my third child, and going through IVIG transfusions would be challenging, so that is the reason we chose to delay a third pregnancy until Ben was a little older. Fortunately, we were living in another great place for care, outside of Ann Arbor, Michigan. I first consulted with the head of the Maternal Fetal Medicine Department at U of M hospital. He explained that I would first meet someone for genetic counselling, and he explained how my pregnancy would be approached and who would handle my care. After becoming pregnant, my MFM doc (Dr. Van de Ven) drew out a diagram for me and explained that we would only have a 25% chance of having a NAIT Unaffected pregnancy. (I’m assuming my first baby fell into this 25%). My husband was homozygous for the Rh factor, so we already knew that this baby would be Rh positive, and therefore, Rh disease was a given. And I had also developed new antibodies (anti Jka (Kidd), which also affects red blood cells, but for which there is no RhoGAM type shot. (But I was beyond the point of needing a RhoGAM shot anyway – after mother develops Rh antibodies, the RhoGAM shot does no good). So, he said we would do an amnio (at 8 weeks? 12?), to check for the baby’s platelet type, and find out whether this would be another NAIT affected pregnancy. And sure enough, my husband’s darn platelet type won out again. Dr. V joked with me that “you picked the wrong bar line when you met your husband.” 😉 His sense of humor was invaluable to me during that stressful pregnancy.
I started IVIG infusions at 18 weeks of pregnancy. And I vaguely remember that some in the Yahoo NAIT group started at 12 weeks, and I was nervous about waiting, but Dr. Van de ven was confident about this timeline. And if I remember correctly, those who started at 12 weeks, usually had had a more severe previous NAIT pregnancy (with ICH). I remember that within the NAIT support group, women really had different experiences in their reactions to IVIG. I would say that I had a very difficult time with it. I had severe headaches, and severe fatigue. Just when I would start feeling better, it was time to go in for another infusion. My routine was to go straight from the infusion room (which was on the bone marrow transport floor), over to the High Risk pregnancy area of the hospital, for my weekly Doppler ultrasound to check baby for signs of anemia. One thing I learned early on, like many others, is that I did better when the infusions were run SLOW over a longer time period. And I also learned to call the infusion room prior to leaving my house, so that the IVIG preparation would be ready to go, by the time I got there.
One time they mixed up my bag with another patient’s bag (he was getting it for an autoimmune condition), and thankfully, it was caught early enough to avoid disaster as this patient had previously gone into anaphylactic shock when receiving my brand of IVIG. But since both bags had already been started, both had to be pitched after that…talk about a very EXPENSIVE mistake!!! And scary to witness that type of mistake, as well. My dosage was much higher than his too, so if the mistake had not been caught on my end, I would not have received enough of the IVIG product. I also learned early on that Benadryl seemed to decrease my side effects from the infusions, so they were always used. I know that some women also added a steroid (prednisone?), but I never required that. I had some great conversations with my fellow “infusees”, and made good friends in my nurses. I still exchange Christmas cards with the head infusion nurse, who just recently retired. 🙂 So, I things went rather typically for me until the 25th week of pregnancy. Rather than just the typical reaction of headaches and fatigue following my infusion, my symptoms became severe (I don’t think this happened right away, but maybe a few days later?). Just the act of taking a shower was an exhausting task. I could not tolerate any light with my excruciating headache. I don’t remember what exactly prompted me to go see my primary care doc, but that is what I did. I had a fever, low wbc count, elevated liver enzymes, and was anemic. My MFM said that we would hold off on the IVIG, but that when I came in for my weekly Doppler u/s, to bring a bag, because if my counts were still the same, I would be admitted to the hospital. To add to the drama, my Doppler u/s numbers were not good, indicating that my baby was possibly becoming anemic. This was definitely one of the most stressful times in my life. I was admitted, and for some reason IV antibiotic was started (I guess because of the fever). Being in a teaching hospital, I saw a ton of white coats over the next 5 days. Infectious disease team, Ob team, High risk Ob team, and other specialties of which I cannot remember). I was miserable, and scared. When my fever let up, and some counts had improved, my MFM ordered my IVIG treatment. It was started in the evening of my 5th night, and I was supposed to be discharged the following morning. But on waking, I noticed that my bag of IVIG was still full!!! Ugh! I have no idea why no night time nurse noticed that my bag (bottle?) was not running correctly. So, I was stuck in the hospital a whole extra day due to that error. I think I was too out of it over night to have noticed that the liquid was emptying.
Before I could leave the hospital, I had to go over to the Cancer Center to meet with a hematologist, since my white blood cell count was still dangerously low. I was told if my counts did not improve by the following visit for my next IVIG infusion that I would have to have a bone marrow biopsy. This scared me to death, as a friend in the infusion room had just told me that he had had a bone marrow biopsy, and it was the worst pain of his life!!! Also, after the 5 days in the hospital and seeing countless docs and specialists, no cause of my illness was found. Best guess was viral. However, my MFM always felt that it was a reaction to the IVIG. After reading one of the NAIT stories on the NAITbabies website, it seems very clear to me that I had an aseptic meningitis reaction to the IVIG. I have NO idea why no one ever mentioned this possibility to me, because after reading about aseptic meningitis, there is no doubt in my mind…and I believe I had another experience with aseptic meningitis a couple years later, when I was given Bactrim to treat an UTI. After one dose of Bactrim, my brain and skull felt like they would explode, and I subsequently started vomiting (I believe vomiting was due to the extreme pain). The doc quickly changed antibiotics, and I have NEVER taken Bactrim, or any other sulfa drugs, again. I’m very curious about what exactly caused that reaction to that particular batch of IVIG. It had been the same brand that I had been receiving all along. At the time, there was no one in the NAIT support group who had experienced a situation like mine. I have not gotten through reading all of the stories on the website, but I am curious if I will find that others experienced something similar.
Fortunately, by the next week’s infusion, my wbc had gone up enough, that the oncologist felt comfortable enough to hold off on the bone marrow biopsy. I felt as if I had dodged a bullet. I was still quite anemic, so spent the next several weeks working on that, by eating more red meat and spinach. I was crushed to miss my family’s trip to Disney World (which I had planned as our last “hurrah” before the craziness of adding baby #3). My docs did not want me going as my wbc count was still low enough to make infection more possible. I really wouldn’t have felt up for it anyway. My mom helped nurse me back to health, while my husband, boys, and in-laws whooped it up in Disney World. I was happy for them, but it was a depressing and difficult time.
Fortunately, I had no other issues with subsequent infusions, beyond the typical fatigue and headaches. Subsequent Doppler ultrasound numbers also looked pretty good, with the only “bad” one being the time when I was hospitalized. My MFM was comfortable waiting until 38 weeks to deliver, but I was nervous about the fluctuating Doppler numbers, and never had a PUBS, so the platelet status was an unknown…so I opted for delivery at 37 weeks, when lungs were shown to be mature, and bilirubin was barely detectable, indicating baby was doing great from a Rh disease stand point. For some reason, I always assumed that baby #3 would be in the NICU. I had never allowed myself to entertain the idea of having the baby room with me, until a conversation with my MFM soon before my scheduled delivery date. He informed me that it was possible that the baby would not require NICU care. I almost wished he hadn’t said that, because I was too scared to get my hopes up.
Alas, on June 30, 2006, baby Charlie came into the world screaming – and hasn’t stopped with his loud voice since! 😉
He did spend a bit of time (hours) in the NICU, but that was only due to some concern about his respiration (he required a bit of oxygen right after birth), but I was later told it was just a precaution, he was just fine. The first thing my MFM doc said to me with a big smile as he lifted my son in the air was, “No bruises!!” Charlie’s weighed 7lb 7oz and had a platelet count of 177,000. I later realized that my husband, Timothy, and my sons, Jackson, Bennett, and Charles all have 7 letters in their name….so YES, 7 has become this family’s lucky number!!!! 🙂
Charlie had no signs of anemia, (though did develop a mild case of jaundice when we took him home). My MFM believes that the IVIG most likely helped prevent my antibodies from attacking Charlie’s red blood cells as well. So in a sense, I killed two birds with one stone.
Anxious to see and hold my baby, I made my husband wheel me down to the NICU after I had been moved to my room from the recovery room, all the while having him pull over every time I felt nauseous from effects of the anesthesia. It was quite the scene. Only to finally arrive at the NICU to have the nurses greet us with, “We were just about to bring him to you!” Ha! Surprisingly, at this particular hospital, C-section patients are only kept for 48 hours. But let me tell you that was 48 hours of sheer bliss, because I had never dared to hope that I would get to keep my baby in the room with me, and I had never dared to hope that he would be born so healthy! I didn’t even want visitors, I just wanted to sit and hold and stare at my beautiful third son, and NAIT miracle! The only rough patches were the first night he had explosive meconium all night long, which made sleep elusive…and watching the phlebotomists struggle and repeatedly try and fail to get a blood draw from his tiny body. It was terrible!!! Finally, one of them took him into another room and gave him sugar water while successfully completing the blood draw.
Charlie has always been very healthy from a NAIT stand point. He also developed reflux at around 2–3 months old, which made his night time sleep problematic, and he was a heavy spitter…but all things considered, we felt blessed to have the outcome that we did. I was so grateful for the information and encouragement I found in the Yahoo NAIT support group, grateful for the companionship I found in the infusion room, and grateful for the competent care I received with when my 1st NAIT baby was born, and with the care and treatment I received during my 2nd pregnancy with my third child. I’m pretty sure that when my husband changed companies a few months later, and therefore insurance providers, MCARE of Michigan was more than happy to see me go! Lol, because that was one VERY expensive pregnancy, for which I was very fortunate to get full insurance coverage.
Thank you for taking the time to read my very long NAIT story. We feel so very fortunate to have 3 healthy and happy boys. While my last 2 pregnancies were stressful to say the least, I have no regrets in taking on the challenge of a NAIT affected pregnancy. I am also so grateful for the wonderful treatment I received, and the knowledge I gained from fellow NAIT mommies during my last pregnancy. Best wishes to those of you who are currently pregnant, or planning a future pregnancy.
13 September 2015