Well, if you're reading this, then you know that we DID decide to try for another child. But coming to that decision and following through with it was not an easy one.
NAIT is such a rare condition and it IS life threatening to the baby if not treated OR if treatments don't work. And yes, there are plenty of women out there whose children did not make it despite it all. But the outcomes are pretty good if you do follow a good protocol. About 95% success, which is about the same as a "normal" pregnancy.
Another thing to take into consideration is that the treatment plan is pretty grueling. Just google IVIG and Prednisone and read all the side effects. They are major medicines and IVIG is made from over 1,000 blood donors' plasma!! Not to mention that the treatments take about 6-8 hours to get and I have to get them twice a week from 20 weeks until delivery. It is also very expensive - about $30,000 per treatment when given in the hospital and about $6,000 when done at home. (Thank God for insurance!!)
But Jeff and I decided that we really wanted another child and that we would allow God to make that call for us. On September 4, 2009, I took a pregnancy test and it was positive!!! We were overjoyed!! Of course, my next sentiment was fear. And that is an emotion I grapple with on a daily basis.
I think up until this point, Jeff and I have both been able to ignore the NAIT. Jeff obviously more than me. As any mother knows, dads tend to be less connected during the pregnancy, and with good reason. They aren't constantly reminded of the living child growing inside of them. And obviously I have read a lot more about this condition and know many stories where there were horrible outcomes. (I belong to an online support group for moms like me.). I have also read and cheered on many mothers before me that have gone through it all and had healthy babies at the end.
Right now I am 20 weeks pregnant and my first round of treatments are set up for this Saturday and Sunday down at the Medical Center. Hopefully I tolerate them well and will get to start my home treatments next Wednesday.
We know that we are having another little boy and we are thrilled!!! It was wonderful to see the ultrasound last Monday and know that for now, his little head is okay. I will never stop worrying. I think it's near impossible. It's a mom thing I guess!! Some days I am totally okay. Other days I'm good enough. But everytime I feel my little one move in my tummy, I'm perfect. I just gotta make it to April!!
I will be writing again on Saturday to fill you in with how my first round of IVIG goes!!! At least I will know that I am doing as much as I can to help my son. That is something good to take from it all!! I don't mind the needles, the time or the nasty side effects. If it gets this baby here and keeps him from going through what Jay did, then I will do it. I'll walk through fire.
Sunday, December 27, 2009
Monday, December 21, 2009
The results are in!
And they weren't good. We found out, that yes, NAIT was the cause of Jay's extremely low platelet count. The next question was what were the chances of it happening again. Tne answer? 100%!!
The reasoning was that my platelet typing was HPA 1B/1B, which basically meant I was negative of a certain antigen (kind of like I was missing a protein on HPA 1.) Jeff on the other hand was HPA 1A/1A, which meant he was completely positive of that certain antigen or protein. What that meant for us having children was that every time we conceived, I would give the baby one of my HPA 1B platelets and Jeff would give the baby an HPA 1A platelet.
After that occurs, my immune system would eventually pick up on this strange antigen that my body lacks, see it as a foreign body and being making antibodies that would pass through the placenta and attack the baby's platelets. Then baby's spleen would get rid of those platelets with the antibodies, leaving the baby extremely thrombocytopenic and at risk for a bleed, namely in the brain, which can cause extreme brain damage or death.
Nice, huh? Oh, and what made it SO much better, was to find out that my platelet typing was only present in about 2% of the population!! Yeah, you read that right - 2%!! WTH!!!!! Now, if Jeff had also been an odd bird like me and been HPA 1B/1B, we wouldn't have the problem at all, though if we ever had girls, they would have a problem with their spouses since more than likely, their husbands would sport an HPA 1A like most people in the world. If Jeff had been HPA 1A/1B, then we would have had only a 50% chance that the next baby would be affected. But NOOOOOOO, we both had to be pure breed homozygous people. Awesome.
But Dr. Moise was still very positive. He told us that even though Jay's counts were very low, he still managed to not suffer a bleed because the platelets he DID have were functioning. There are many babies out there whose counts are significantly higher (though still very low), but higher than Jay's counts, and they suffer massive bleeds, sometimes while in their mothers. So that being said, we were put into a moderate risk category instead of a high risk for bleeds.
Treatments would be grueling and another baby would mean lots of worrying on my part. So now the question was, should we have another? Do we dare tempt fate? Dr. Moise's advice was yes, have one more, and make that be it. The more babies you have, the more problems you have with NAIT because it becomes harder and harder to trick your immune system even with all the medications. Not to mention that the medications are very yucky and cause lots of side effects. Oh yeah, and one of the main medications is actually made from human plasma, so blood products. Really cool, right? Most women test positive for viruses like Hepatitis and HIV for at least a year after finishing treatments. It's not that they really have the viruses. They are just surface antigens from the medication and eventually get out of the mother's system, but still, not too cool to have an HIV scare!
NAIT is very much like RH disease, except that it's on the white blood cells instead of the red blood cells. RH negative people account for about 15% of the population and prenatal testing is routine, therfore, they can put off the mom's immune system with the very first pregnancy. NAIT only affects about 1 in 1000 babies and right now, they can't validate the cost of testing every pregnant woman. Though if they did, and they could identify which women lacked the antigens, there would probably be a way to put off mom's immune system with the very first baby and possibly prevent problems in future pregnancies. I, personally, am very hopeful that at some point in the not so distant future, platelet typing will become standard with mothers-to-be and hopefully, NAIT can be like RH disease. It can be virtually prevented and not be something so scary. Remember, not so long ago, RH disease killed a lot of babies. Now most women have hardly any complications if they are caught in the first pregnancy.
In my next post, the decision to try or not......
The reasoning was that my platelet typing was HPA 1B/1B, which basically meant I was negative of a certain antigen (kind of like I was missing a protein on HPA 1.) Jeff on the other hand was HPA 1A/1A, which meant he was completely positive of that certain antigen or protein. What that meant for us having children was that every time we conceived, I would give the baby one of my HPA 1B platelets and Jeff would give the baby an HPA 1A platelet.
After that occurs, my immune system would eventually pick up on this strange antigen that my body lacks, see it as a foreign body and being making antibodies that would pass through the placenta and attack the baby's platelets. Then baby's spleen would get rid of those platelets with the antibodies, leaving the baby extremely thrombocytopenic and at risk for a bleed, namely in the brain, which can cause extreme brain damage or death.
Nice, huh? Oh, and what made it SO much better, was to find out that my platelet typing was only present in about 2% of the population!! Yeah, you read that right - 2%!! WTH!!!!! Now, if Jeff had also been an odd bird like me and been HPA 1B/1B, we wouldn't have the problem at all, though if we ever had girls, they would have a problem with their spouses since more than likely, their husbands would sport an HPA 1A like most people in the world. If Jeff had been HPA 1A/1B, then we would have had only a 50% chance that the next baby would be affected. But NOOOOOOO, we both had to be pure breed homozygous people. Awesome.
But Dr. Moise was still very positive. He told us that even though Jay's counts were very low, he still managed to not suffer a bleed because the platelets he DID have were functioning. There are many babies out there whose counts are significantly higher (though still very low), but higher than Jay's counts, and they suffer massive bleeds, sometimes while in their mothers. So that being said, we were put into a moderate risk category instead of a high risk for bleeds.
Treatments would be grueling and another baby would mean lots of worrying on my part. So now the question was, should we have another? Do we dare tempt fate? Dr. Moise's advice was yes, have one more, and make that be it. The more babies you have, the more problems you have with NAIT because it becomes harder and harder to trick your immune system even with all the medications. Not to mention that the medications are very yucky and cause lots of side effects. Oh yeah, and one of the main medications is actually made from human plasma, so blood products. Really cool, right? Most women test positive for viruses like Hepatitis and HIV for at least a year after finishing treatments. It's not that they really have the viruses. They are just surface antigens from the medication and eventually get out of the mother's system, but still, not too cool to have an HIV scare!
NAIT is very much like RH disease, except that it's on the white blood cells instead of the red blood cells. RH negative people account for about 15% of the population and prenatal testing is routine, therfore, they can put off the mom's immune system with the very first pregnancy. NAIT only affects about 1 in 1000 babies and right now, they can't validate the cost of testing every pregnant woman. Though if they did, and they could identify which women lacked the antigens, there would probably be a way to put off mom's immune system with the very first baby and possibly prevent problems in future pregnancies. I, personally, am very hopeful that at some point in the not so distant future, platelet typing will become standard with mothers-to-be and hopefully, NAIT can be like RH disease. It can be virtually prevented and not be something so scary. Remember, not so long ago, RH disease killed a lot of babies. Now most women have hardly any complications if they are caught in the first pregnancy.
In my next post, the decision to try or not......
Saturday, December 19, 2009
Finding Out
For 18 months, I read everything I could about platelet disorders and the only thing that made sense was Neonatal Alloimmune Thrombocytopenia (NAIT). I was freaking out!! For one thing, the prognosis wasn't good. We would either have a 50% chance or a 100% chance of reoccurence and if we had another baby without treatments, the outcome was bleak. For another thing, the reality of what Jay managed to survive relatively unscathed sunk in. God we had come close!!! So close to losing him. I still don't think people realize just how close we came to our first born being fatally harmed by this disease. To this day, I still play the what if game. "What if he weren't born by c-section? What if we had waited one more day?". The what if game can drive you mad.
Last November, I called Dr. Yee to get advice about being tested for NAIT. He told me to try with my regular OB. I had already switched doctors from my delivering OB since he told me that what happened to Jay was a fluke and made me feel horrible about not breastfeeding Jay, which coincidentally was when his levels went up. (Antibodies are still passed in breast milk to baby and can possibly keep levels low.)
My new OB told me that if it was NAIT, then Jeff and I should not have anymore children. The treatments were so cumbersome. We should just count our blessings and move on. I was devastated.
I cried and cried, knowing I had always wanted two children of my own and here was someone, a medical doctor, telling me no. I called Dr. Yee back and he told me that was ridiculous. He referred me to Dr. Moise at Baylor in the Texas Medical Center. Dr. Moise is a Maternal Fetal Medicine doctor that specializes in fetal surgery and has done a lot with hematology and immune problems. Jeff and I went to meet with him in February of 2009 to have our blood drawn and sent off to Wisconsin. Then it was a waiting game.
Last November, I called Dr. Yee to get advice about being tested for NAIT. He told me to try with my regular OB. I had already switched doctors from my delivering OB since he told me that what happened to Jay was a fluke and made me feel horrible about not breastfeeding Jay, which coincidentally was when his levels went up. (Antibodies are still passed in breast milk to baby and can possibly keep levels low.)
My new OB told me that if it was NAIT, then Jeff and I should not have anymore children. The treatments were so cumbersome. We should just count our blessings and move on. I was devastated.
I cried and cried, knowing I had always wanted two children of my own and here was someone, a medical doctor, telling me no. I called Dr. Yee back and he told me that was ridiculous. He referred me to Dr. Moise at Baylor in the Texas Medical Center. Dr. Moise is a Maternal Fetal Medicine doctor that specializes in fetal surgery and has done a lot with hematology and immune problems. Jeff and I went to meet with him in February of 2009 to have our blood drawn and sent off to Wisconsin. Then it was a waiting game.
Tuesday, December 15, 2009
So Then What Happened?
We had to take Jay back to the doctor the following Wednesday. He was exactly one week old. We left our house at 5:30 in the morning to make it down to the Texas Children's Cancer and Hematology center in the Texas Medical Center. I can tell you that as a new parent, sitting in the bright, colorful lobby with young kids around you with little to no hair because of undergoing cancer treatments is one of the most daunting tasks I've had to endure. I wanted nothing more than to just make those kids healthy.
After waiting for what felt like an eternity, Jeff and I took Jay to meet with Dr. Yee, a Pediatric Hematologist. He explained that platelet disorders are very mysterious and that it can be difficult to pinpoint the exact cause. It looked like Gestational
Idiopathic Thrombocytopenia Purpura (ITP), because I too, had developed low platelets, but what really threw him off was that most babies whose mothers had ITP do not have such low counts and they definitely respond much better to transfusions.
He wouldn't call it (Neonatal Alloimmune Thrombocytopenia) NAIT either. NAIT is a rare condition that causes a baby to have low platelets due to an incompatibility between the mother and father. It's only seen in about 1:1,000 births. We would have to get our blood drawn and sent off to Wisconsin Blood Center, one of the leading labs in the United States. It would take a few weeks to know and he wasn't sure we needed to do the testing right away, but suggested we get checked before having another baby.
Jay continued to have his levels checked, because at Texas Children's, his levels had dropped again from 116,000 to 65,000. So we began going weekly to our local pediatrician to have his feet pricked. Poor Jay's feet looked like they had been pounded with a meat cleaver. About a month after Jay was born, he finally reached a high level - over 185,000!!!! I was thrilled when my boy was finally given a clean bill of health.
My delivering OB said it was just a fluke. It would never happen again. I could go on to have a perfectly healthy pregnancy with #2. But in my gut, I knew something had happened to Jay. The etiology of it all was too severe to have just been a fluke. But it wouldn't be until March of 2009, a full year and a half after Jay's birth, that I would have all my questions answered.
After waiting for what felt like an eternity, Jeff and I took Jay to meet with Dr. Yee, a Pediatric Hematologist. He explained that platelet disorders are very mysterious and that it can be difficult to pinpoint the exact cause. It looked like Gestational
Idiopathic Thrombocytopenia Purpura (ITP), because I too, had developed low platelets, but what really threw him off was that most babies whose mothers had ITP do not have such low counts and they definitely respond much better to transfusions.
He wouldn't call it (Neonatal Alloimmune Thrombocytopenia) NAIT either. NAIT is a rare condition that causes a baby to have low platelets due to an incompatibility between the mother and father. It's only seen in about 1:1,000 births. We would have to get our blood drawn and sent off to Wisconsin Blood Center, one of the leading labs in the United States. It would take a few weeks to know and he wasn't sure we needed to do the testing right away, but suggested we get checked before having another baby.
Jay continued to have his levels checked, because at Texas Children's, his levels had dropped again from 116,000 to 65,000. So we began going weekly to our local pediatrician to have his feet pricked. Poor Jay's feet looked like they had been pounded with a meat cleaver. About a month after Jay was born, he finally reached a high level - over 185,000!!!! I was thrilled when my boy was finally given a clean bill of health.
My delivering OB said it was just a fluke. It would never happen again. I could go on to have a perfectly healthy pregnancy with #2. But in my gut, I knew something had happened to Jay. The etiology of it all was too severe to have just been a fluke. But it wouldn't be until March of 2009, a full year and a half after Jay's birth, that I would have all my questions answered.
Monday, December 14, 2009
Why Lemonade Mama?
Because in this life we lead, sometimes things don't turn out quite like we expect. Sometimes God gives us lemons, my friends; and we must make lemonade. Since this is my very first post, I should tell you just a little bit as to how I came to this philosophy. See, for the better half of my life, I got along pretty well. Things always had a way of falling into place. I came from a loving home, got good grades, went to a good college, married my soulmate, etc. Life was pretty perfect and I always expected it to be that way!!!
Then in December of 2006, I got pregnant with my first child. It wasn't exactly perfect timing. My husband and I had just moved and we were living in a much smaller home with most of our stuff still in storage. My husband was starting his own business and we were pretty much existing on my teaching salary, which wasn't much. But we were so excited, none the less.
The following April, we learned that we were expecting a little boy and we were overjoyed!!! Preparations were underway and the whole family was on the edge of their seats waiting for the arrival of the first grandson and nephew!!
In the early morning hours of August 15, 2007, I began having very painful contractions. They kept me from being able to breathe, so I had my husband drive me to the hospital. They admitted me and said they would go ahead and induce me since I was 38 weeks and obviously in a lot of discomfort. At 6:30 that morning, they started the Pitocin and nothing happened!! Twelve hours later, there was still no sign of baby and my doctor was ready to make it happen so we decided on a c-section. Not my ideal way to deliver!! This wasn't how it was supposed to go, but after 16 hours of contractions and no progress, I was over it!!
They had to put me under because my epidural left one of my sides with feeling and so they had no choice unless I wanted to feel the whole
thing (no thanks!). My son Jay came into this world at 6:38 pm!! I awoke to my hubby's face telling me he was beautiful, a little splotchy, but
beautiful!! They brought him to me that night to feed and he was gorgeous!! I had no idea my life was about to be flipped, that the other shoe was about to drop.
At about 2 am, doctors came to tell us that my son needed platelet transfusions because he was dangerously low and could begin hemmorhaging at any moment. I was still so drugged up, I barely had time to register what was happening. They transfused him, but his levels barely rose. They transfused again. The counts did nothing. Even with two doses of a drug called IVIG, his counts would not rise. It felt like an ice cold knife in my heart when they told me his counts weren't getting better. To make matters worse, he was in the NICU and for the first day after he was born, I couldn't hold him or nurse him. I already felt left out of his birth, and then to be told that I couldn't hold my baby boy.
Jeff and I tried to keep a brave face on and smile through it all. Our one shining light was that a head ultrasound of Jay's head showed no signs of a bleed in his brain. The doctors could give us no concrete answer as to why this happened. It would be a question that would haunt me for the next 18 months. A monster I did not have a name for quite yet.
Finally, they transfused Jay with Apheresis platelets, which means they were washed and were very plain so that his body wouldn't continue to reject them. My boy, born with a count if 8,000 platelets (when a normal range is 150,000 - 400,000) finally achieved a count of 116,000!! I cried tears of joy!! We got to take our boy home on August 19, 2007. But despite our joy, we had a feeling we weren't out of the woods yet. And this thing, this "fluke" wasn't just a fluke after all.
Then in December of 2006, I got pregnant with my first child. It wasn't exactly perfect timing. My husband and I had just moved and we were living in a much smaller home with most of our stuff still in storage. My husband was starting his own business and we were pretty much existing on my teaching salary, which wasn't much. But we were so excited, none the less.
The following April, we learned that we were expecting a little boy and we were overjoyed!!! Preparations were underway and the whole family was on the edge of their seats waiting for the arrival of the first grandson and nephew!!
In the early morning hours of August 15, 2007, I began having very painful contractions. They kept me from being able to breathe, so I had my husband drive me to the hospital. They admitted me and said they would go ahead and induce me since I was 38 weeks and obviously in a lot of discomfort. At 6:30 that morning, they started the Pitocin and nothing happened!! Twelve hours later, there was still no sign of baby and my doctor was ready to make it happen so we decided on a c-section. Not my ideal way to deliver!! This wasn't how it was supposed to go, but after 16 hours of contractions and no progress, I was over it!!
They had to put me under because my epidural left one of my sides with feeling and so they had no choice unless I wanted to feel the whole
thing (no thanks!). My son Jay came into this world at 6:38 pm!! I awoke to my hubby's face telling me he was beautiful, a little splotchy, but
beautiful!! They brought him to me that night to feed and he was gorgeous!! I had no idea my life was about to be flipped, that the other shoe was about to drop.
At about 2 am, doctors came to tell us that my son needed platelet transfusions because he was dangerously low and could begin hemmorhaging at any moment. I was still so drugged up, I barely had time to register what was happening. They transfused him, but his levels barely rose. They transfused again. The counts did nothing. Even with two doses of a drug called IVIG, his counts would not rise. It felt like an ice cold knife in my heart when they told me his counts weren't getting better. To make matters worse, he was in the NICU and for the first day after he was born, I couldn't hold him or nurse him. I already felt left out of his birth, and then to be told that I couldn't hold my baby boy.
Jeff and I tried to keep a brave face on and smile through it all. Our one shining light was that a head ultrasound of Jay's head showed no signs of a bleed in his brain. The doctors could give us no concrete answer as to why this happened. It would be a question that would haunt me for the next 18 months. A monster I did not have a name for quite yet.
Finally, they transfused Jay with Apheresis platelets, which means they were washed and were very plain so that his body wouldn't continue to reject them. My boy, born with a count if 8,000 platelets (when a normal range is 150,000 - 400,000) finally achieved a count of 116,000!! I cried tears of joy!! We got to take our boy home on August 19, 2007. But despite our joy, we had a feeling we weren't out of the woods yet. And this thing, this "fluke" wasn't just a fluke after all.
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