Anti-kell Antibodies: Dr. Moise’s New Treatment

I want to start this post by saying how thankful I am for doctors like Dr. Ken Moise. He thinks outside of the box and works so hard to come up with new treatment ideas instead of just doing what doctors have done for years. Nora is alive because he pioneered the use of plasmapheresis and IVIG to treat red cell alloimmunization/isoimmunization (antibodies during pregnancy/hemolytic disease of the fetus/Rh disease- there are so many different names for the disorder I don’t know what to call it, sorry!) He is now working on a new treatment that seems even more effective and groundbreaking than those treatments.

Dr. Moise is working with a pharmaceutical company to develop a new drug that will block all maternal antibodies from going through the placenta and getting to the baby. This treatment is still a few years away from actual use, but thankfully, the FDA has agreed to fast track the drug’s approval process. The drug is being tested right now through a series of safety experiments in pregnant primates. If these studies prove safe for the mother and her fetus they will proceed to studying safety in human volunteers for one month (non-alloimmunized individuals). Hopefully the human trials will start this year (2016.) The first human trial will test whether the drug is safe. After the drug proves to be safe for humans, they will go to the next phase in the safety study and will test alloimmunized women who have completed their child bearing years (they have undergone a tubal or their husband has undergone a vasectomy.) The trial will show if the drug does affect the titer and will help them figure out the dose needed to suppress the antibody level. The final phase would be to give the medication to pregnant alloimmunized patients with a high antibody titer (say greater than 1000) with a history of a pregnancy loss at < 24 weeks. These patients would be monitored in a specialized center with serial MCAs with intrauterine transfusions as a reserve for treatment failures. Hopefully, the new drug will block the maternal antibodies from getting to the baby, which will protect the baby from getting anemic. The only problem with this new drug is the fact that it blocks all maternal antibodies from getting to the baby, even the good antibodies. This is something they are working on now.

The best part of this new treatment (assuming that it works) is the absence of invasive procedures and interventions. The baby won’t need any plasmapheresis, IVIG, or intrauterine blood transfusions to survive. Dr. Moise’s hope is that by the time he retires, he won’t need to teach any younger doctors how to do intrauterine blood transfusions because they will not be needed. Dr. Moise also told me he was hopeful that it would be ready in time for me to have another baby (I am 35 at the moment.) I am praying that this drug works and saves many lives in the future. Ever since I learned that I had anti-kell antibodies I have been worried about my future grandchildren. Would my son, Asher (who is kell positive) one day face these same problems with his own wife and children? What about Liam? We don’t know if he’s kell positive or negative. What about Nora’s sons? Would they grow up and get married only to find out about the “curse” Josh and I have handed down to them? What about Josh’s brother, Caleb, and his wife and kids? These questions haunted me, but because of this new treatment possibility I can relax knowing that in the future a few simple injections or pills during pregnancy could keep these precious babies safe. I’ll keep this page updated with any new information that Dr. Moise shares about the drug and the safety trials along the way.

 

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Happy Birthday Nora!

Happy first birthday to my beautiful baby Nora.

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I still can’t believe she is here alive and thriving. I probably started writing at least four different blog posts about this huge milestone and how amazing this past year has been, but most of them ended up being about me and not Nora. I also ran out of time and realized that today I wanted to spend my time just hanging out with my girl instead of editing blog posts. Now she is sleeping soundly in her crib after a fun day and I’m typing up a quick happy birthday post. I decided last minute to take the boys to the beach for a night (we’re leaving early tomorrow morning and they have no idea!) so I have to pack for the trip. I will write more about her birthday when I get back.

We had such a great, laid back day. Asher came running out of his room really early asking, “Where is baby Nora?” I told him she was still asleep and he said, “Oh, well, what does she look like?” I broke the news that she still looks the same as she did yesterday. “Oh, no! You mean she still looks like she’s zero? Can she at least walk?” Poor guy. He was expecting her to be an instant toddler when she turned one. After everyone woke up, we sang happy birthday to her this morning as she stuffed a giant pink cookie in her mouth.

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She opened some of her presents while the boys crowded around. She will open the rest of her presents at her party this coming weekend. Liam and Asher loved watching her open presents.

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Also, please ignore her crazy outfit…apparently that’s what I put her to bed in last night! Nora’s favorite part of her birthday was when we took her to a pet store and let her look at the little animals. Also, notice the tiny puppy she brought along to the pet store…my heart cannot handle the cuteness.

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DSC_0491It is hard to believe that this was one whole year ago.

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We are so incredibly thankful for Nora’s life and we love watching God use her already as a light to others. Happy birthday precious girl. We love you! Here are a few pictures from our DIY birthday shoot:

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And this is my favorite one…like she’s looking up at her big sister:

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To the Doctor Who Saved My Daughter’s Life

Dr. Moise,

Our miracle baby Nora will be a year old in a couple of days. We know that without you, this past year would have been very different and Nora would not be here with us today. One whole year of kisses. One whole year of full arms and mended hearts, of doting big brothers and tiny dresses and a warm little body on my chest. One whole year of little details emerging, revealing who our daughter is…

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Those big brown eyes with long, dark eyelashes; her content and happy spirit; her sensitive heart; her desperate love for animals. She’s everything to us. She is her Grandma’sĀ first living granddaughter, ourĀ first living daughter, my rainbow baby, the pride and joy of her brothers, someone’s future wife, someone’s Mommy. Thank you for seeing that, for seeing her value before she was even viable. You treated her like the most special baby in the world, even though I knew that she was just one of the many babies you helped on a daily basis. Thank you for recognizing how important this little life was to us, and for treating her with respect before she even took her first breath.

It is rare to find a doctor who is so generous with his time. I still remember emailing you, grasping for answers and a glimmer of hope after Lucy died. You didn’t know me. I wasn’t your patient or a family friend or anything, but ten minutes after I sent that email I couldn’t believe it when my cell phone rang showing an incoming call from Houston. You talked to me for 45 minutes, sharing your opinion about what happened to Lucy and discussing our possibilities for another child. I remember how much that meant to me at the time; a gesture of kindness from a stranger who thought Lucy’s life was important enough to spend his time discussing. Every single time someone contacts me with questions about anti-kell antibodies or advice about what their treatment should look like I give my time gladly knowing how much it will mean to them.

Thank you for thinking outside of the box and pushing for better treatment options long before Nora was even conceived. Thank you for not accepting, “This is the way it’s always been done” or, “There’s nothing we can do.” Those ideas of yours saved her life and the new treatment you are working on now will hopefully save many more lives, maybe even my grandchildren. And when you save a baby’s life, you don’t just save a baby’s life. You save the parents from living the rest of their days without their child. You save the grandparents, the cousins, the siblings and the aunts and uncles from a devastating heartache.

We will always think of you on Nora’s birthday and tell her about you when she gets older. Liam and Asher know who you are. In our family, Dr. Moise is a household name. We want our kids to know how one life can be used by God to change the lives of other people for good. We will always be grateful for the priceless gift you have given us, our Nora Juliet.

With love,

Josh, Bethany, Liam, Asher and Nora Weathersby

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