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Challenge: Infertility

From IVF to Miscarriage to Anti Kell

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My journey has been a long one. A tough one. Filled with tears, unknowns, embarrassment, fear, and joy all rolled up into one. In 2015 after a year of trying for a baby with no success my husband and I finally took the plunge to see an IVF doctor. We found out my husband has Azoomspermia which means no sperm in his semen. We made the trip to Boston and met with the best doctors to see if in fact my husband could get surgery to see if he had any sperm. After cutting him open he did in fact have sperm (thank god) and we were able to freeze it and move on to our first fresh cycle of IVF. We did not know what we were getting ourselves into but we jumped right into the shots, blood draws, patches, and all the aches and pains that come with a cycle. We collected 9 eggs...1 made it to day 6 as a blastocyst with zero making it to freeze. This cycle ended up in a blighted ovum after 4 weeks and resulted in a DNC. We tried again many times...7 fresh cycles and three frozen. Luckily in 2017 my daughter came and we thought we hit the lottery and still do. She is AMAZING! This past summer we started the whole IVF process all over again with more shots this time around as I am older and my body has changed. I did two frozen cycles which all ended in miscarriage and then one fresh which results in a phone call on day 5 telling me there would be no transfer because no embryos made it to blastocyst. My husband and I were devastated but over Christmas got right back into trying for another fresh cycle. We did everything we could such as trying to eat healthy and take supplements to help the cellular formation of the embryos. This past cycle we thought we hit the jackpot with retrieving the most eggs we ever have at one time. We got 19 mature eggs and by day 5 we had 8 to freeze as they were worried of hyper stimulation. A month later we did a frozen transfer of two beautiful blastocysts. I took home pregnancy tests after pregnancy tests and finally got a strong positive. We were so happy! When I went to get my hcg drawn my numbers were strong and doubling (everything looked good and I finally could breath). At 6 weeks I caught the flu and was deathly sick in bed. I remember coughing really hard and going to the bathroom and just bleeding bright red blood. I cried and in my heart knew I was miscarrying again. I felt terrible from the flu but felt worse thinking my body is broken. My husband held me tight as I called the emergency after hours line. The doctor on call did not get back to me for another three hours.....three agonizing hours to have her tell me there was nothing I could do. A week later I went in for my 1st ultrasound expecting to see nothing and excited to actually see a little baby with a strong heartbeat of 150. I was on cloud nine!!! I wanted to tell everyone and shout out to the world that I FINALLY was PREGNANT!!!! A week or two passed and I met with my OBGYN who ran my blood and checked my cervix saying everything looks beautiful so far and if anything came of my bloodwork she would call. No news is good news I remember her saying. A week later my cell phone rang and across came the name of the doctors office. My heart dropped. The doctor said I showed positive for an antibody called Kell and that I would need to come in asap to get another blood drawn. I asked her what Kell was and she said she did not know much about it and that I would need to meet with a MFM (maternal fetal medicine) doctor as soon as possible. I did and two days later my OBGYN called to tell me that again my levels for Kell were positive. She told me my baby was basically dying inside me because my blood and my husbands blood are not a match. She told me I wouldn't be able to have any more kids. I am a teacher and this all happened on a Friday before teaching the last period of the day. I tried to put a smile on my face and act like nothing was wrong when in reality my world was shattering inside me. I kept thinking I am killing my baby and there is nothing I can do! What is Kell? Why isn't anyone telling me what is going on? I was scared and felt all alone! I was mad at my husband and his family as they are the ones that carried this gene. Only 9% of the population have this antigen called Kell and I picked the lucky one to marry. When my daughter (who we found out is kell positive) was born some of her blood mixed with mine and I formed an antibody to Kell. This means if the baby inside me is Kell positive my blood will start to kill off the babys blood and make it anemic and possibly still birth. I am 12 weeks now and have been back and forth from different hospitals to doctors which no answers. My MFM specialists want me to do this procedure called IVIG and plasmamerasis which is my only chance to safe this baby. Problem is that insurance will not cover it because it is experimental and they do not care that I may lose this baby. My antibody numbers keep rising I am at 512 as of two weeks ago so I am most likely in the 1,000 range. I am scared...I am tired...and I just want to fight for this baby but insurance is the reason it might die (that and I am broken). It is like god is telling me not to have any more children as this journey we have been on is just so tiresome. My husband and I are sending out blood out to the Netherlands to test if this baby is kell positive. This costs $1,000 and insurance will not cover it! My doctor hopes that if we find out a definite if its positive then maybe it will help Blue Cross Blue Shield insurance to change their minds and help us and this baby. We are also schedule for an amniocentesis at the end of May followed by something called an MCA scan. If the baby is anemic they will try to do an emergency infusion of blood through the placenta or into the baby's stomach in hopes to save the baby. If it works I will need to do these weekly. Today I had my end of my 1st trimester ultrasound and I saw the beautiful baby moving around and kicking. Unfortunately I am not sharing this news with anyone as this baby could result in a second or third trimester miscarriage. I have told my family and that is it. I feel I can not share as I don't even know if this baby is going to make it to the end of May. I am embarrassed and sad and just feel broken. I am mad at my husband for having this Kell gene and for giving me the antibody. I just want to have kids the easy way! Our journey has been so rough and its only going to continue to be rough. Why me? Why are we faced with these challenges? My fingers are crossed that insurance hear's our prayers and approves this test one day...and hopefully soon as every day that goes on I am silently killing my baby from the inside. I am now the 2% of the population that has to deal with Kell antibodies. I hope my daughter can get a sibling but I am not so sure that is going to happen. Godspeed!






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