Hello everyone. My name is Carissa. I’ve been reading this site for a couple months now, and I know God brought me here to help get me through one of the toughest trials of my life. Let me tell you why …
I guess you could say that our story started nearly a year ago. I was pregnant with our second child. Eight weeks into the pregnancy I miscarried. No one close to me had ever experienced a miscarriage before, so I had no idea how devastating it would be. When you’re pregnant your mind automatically leaps forward into the future with the new addition to your family: milestones, sibling interactions, Christmases, graduations, weddings, etc. But they came to a quick halt when I miscarried. In the midst of my grief over the loss of this baby and all the things we would experience together, God reminded me that He has a plan and that He is good all the time (even though my circumstances change, His character does not). Little did I know that He was preparing me for an even bigger life-challenge.
My husband (Jeremy) and I knew without a doubt that we wanted to expand our family, despite the setback. As a woman who’s miscarried, there’s a level of fear of getting pregnant again for fear of miscarriage happening again, but I my security was in the Lord and whatever happened would be in His hands.
In January, we found out we’re pregnant again. I had all the “normal” symptoms of pregnancy so I was assured this time it would be different. At my 18-week ultrasound we found out we were having another girl (in addition to our 3-year-old daughter, Kendall)! As the tech measured her, she said my due date was 2 weeks off, which I knew was impossible because I took a pregnancy test as soon as I possibly could and my OBGYN detected a heartbeat at 10 weeks (at 8 weeks this would have been impossible). So my doctor decided to bring me in for another ultrasound the following month to get another look.
During the time between ultrasounds, I had a nagging feeling that something wasn’t right, but I tried to push those thoughts away. At 22 weeks, we went in for a second ultrasound and this time she measured 3 weeks smaller than she should, plus they detected a 2-vessel cord (most umbilical cords have 3 vessels: one vein, two arteries; our baby only had one of each); this is a softer marker for more serious issues. Quickly I was referred to a specialist. She explained that 2-3% of babies displaying these problems would have a chromosomal abnormality and suggested we do an amniocentesis and we agreed to it.
The results would take 2 weeks to get back. During this time, I was certainly worried, but statically speaking I was probably within the 97%, not the 3%, right? Well, that’s what I told myself anyway. So, to our total shock and dismay, after 2 weeks we were told the results were abnormal: our baby had extra material (a translocation) attached to her 4th chromosome and the diagnosis was Wolf-Hirschhorn syndrome. WHAT?!?! I seriously had the doctor repeat “Wolf-Hirschhorn” nearly ten times. Her description was very dim to say the least. She said that, “we would need to make decisions about how heroic we would need to be.” What does that mean? I thought. Jeremy left thinking that WHS was terminal with no hope of life whatsoever. Finally, she told us there’s was nothing more she could do for us and suggested we return to my normal OBGYN. (Oh, before we actually left her office, we decided to have ourselves tested to make sure the translocation was not a result from either one of us – these results came back clear. I had also wondered if our earlier miscarriage was result of something we carried, but apparently that’s not the case).
It wasn’t until I started to do my own research and several friends and family pointed me to this website that I truly began to see what our lives would look like with a WHS child. We soon met with a genetic counselor, who (to my surprise) was great. She was educated, kind, professional, and realistic and she suggested I visit this web site. She never once brought up termination. Although, I still grieved and cried a lot of tears over the loss of a “normal” baby and kissed good-bye some of those future experiences I talk about earlier, I began to see hope. And with every passing week, my grief has lessened and my love and joy over this child has increased.
Sometimes I wonder if I would have preferred to find out the news of WHS after my baby’s birth, and I can’t tell you the answer. But I choose to see God’s grace in allowing us more time to pray for our daughter and prepare us with His strength and wisdom.
Currently I am 35 weeks. We’ve decided our little girl’s name will be Ava Lynn. According to our last ultrasound (which was 3 weeks ago) she is 2 lb, 4 oz. Up to this point, there are no indications of other problems: her heart and heartbeat look good, she does not have a cleft lip and her hands and feet look and function good, her other organs look good too. At one point, the specialist said my amniotic fluid was low, but it’s normal now. Ava is very active! I feel her kick all the time, more so than with my first pregnancy. Our daughter Kendall is very active and healthy, so I’m hoping this is a good sign for Ava. We will have a scheduled C-section on September 28.
Thank you for reading our (long) story. I am looking forward to being a part of this inspiring and supportive community. We will keep you posted when news is available after Ava’s birth.
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Carissa, I thought the same thing about the percentages. Except we were told 5-10% chance of chromosomal abnormality and I thought, well there’s a 90% chance she’s just fine. We didn’t do the amnio that they tried to get us to do but found out about Emma’s WHS diagnosis about 2 weeks after she was born. Your faith is strong, and the Lord with bring you though this and be by your side the whole time. I’m sure Ava will amaze you and the doctors as Emma has as well. Much love and prayers to you and your family as you near your sweet girl’s birthday!
Shannon
Carissa, reading your story brought back so many memories of my pregnancy with Dylan, however we did not find out about his diagnosis until a week after his birth. Know that we all share your journey and are here to support you and your family. I am happy to hear that the genetic counselor referred you to this site. This is a wonderful community to be a part of and I look forward to reading about Ava’s birth. I will be praying for you and your family as you near your delivery date. 🙂
Much love,
Kristy
http://www.ourlittledillpickle.blogspot.com
Carissa- thank you for telling us your story. You will be better prepared knowing what you know now. We’re here for you, so reach out as much as you need to! Good luck!
Hi Carissa, I had a miscarriage 8 years ago as well, than I gave birth to a very good looking and health boy. My third pregnancy came Lucas and he was diagnosed with WHS and he is 12 month old now. Gues when was the due date???? He borned on the same date that it was supposed to born my first child and I had a(miscarriage). My husband and I believed that he is back to us….We love him so much. You wait until you hold the baby and you know that you can not live without.We just found out about the diagnose a week ago. He is a special gift to a special family……. I will be praying for you…and sorry my English is not so good.
Cassia
hi Carrisa, your story brings back all the expe
riences we had during our pregnancy, we only found out after Mfundo was born, it was so devastating . today she is 3 years old, thought she still experiencing some difficulties , I know the Lord has a plan for her. she has brought laughter , joy and happiness into our home.
may the Lord bless you and keep you strong. he has the perfect plan that baby, just never give up.
take care.
Carissa,
I’m sure it is not easy to find out the diagnosis while still pregnant, but I think this gives you a unique advantage – you know what kind of issues you might have, so you prepare for them.
All the best for you and your family.
Much love,
Carissa and Jeremy,
Tom and I are looking forward to Ava Lynn (beautiful name). So good to hear your story. We care about you!
Love, Ann
Carissa,
Thank you for sharing your story thus far. I am so proud of you for your stength in the Lord. You are going to do awesome and so is little Miss Ava Lynn. WHS is scarey and I remember holding my sweet little Hayden at 10 days old and getting his diagnosis.. I was devastated. Flash-forward 6 years later and WOW.. I never knew I could love someone so much and be so proud of someone!! I know God has a plan for each of us and Hayden was in our plan. Yes, I still have my moments and yes, I still get scared (and cry).. but I turn to the Lord and he shows me my handsome little guy and all the JOY that he is full and it just makes all things better!! You are more than welcome to visit Hayden’s caringbridge site. I do not update as much as I use to, but it will give you some insight on Hayden over the last several years. Best of love to you and your family!! May God continue to bless you!!!!!!! http://www.caringbridge.org/visit/haydenmiller
Carissa, thank you for sharing your story. Your story bought back emotions that we experienced in my pregnancy. Our daughter Ellie was also picked up to be small in utero plus she had a cleft lip. However our Amnio didnt pick up WHS, we found this out when Ellie was 11 months old after genetic testing. I dont know if this was easier on us to know latter ,who knows. Good luck for the rest of your pregnancy, I look forward to seeing photos
I have a blog for our daughter Ellie, feel free to check it out
http://ellieedayoung.blogspot.com/
Mel x
Carissa, didnt you tell me you were from Springfield?or is this my imagination hehe….we are in KC ,my daughter is due in Nov…please contact me via email to talk more.chaosnks@yahoo.com
Thank you all for your warm welcome! I can’t express how grateful I am for the way you’ve opened up your lives to us. Small update on Ava: we had an ultrasound yesterday and she’s up to 3 lb 8 oz – over a pound weight gain in less than a month!
chaosnks, I emailed you. 🙂
Welcome! Wonderful job on the weight gain Ava! Magnolia was 3lbs 7oz at birth! We also found out Magnolia’s diagnosis while pregnant and reached out to connect with people. This site has been a wonderful support. I also started a blog to keep friends and family up to date with information, and I have also found that it is a great way to connect with other families.
Thinking of you and your family,
Hilary
http://iwontweargrey.blogspot.com/