Hi everyone I’m Sarah, Baby Ward, Almira Rose, and Aiden William’s mom. My husband and I’s precious miracle babies joined us in February of 2024 after many years of infertility, a miscarriage, and 3 failed transfers of euploid embryos. We did genetic testing multiple times. We did PGT testing of our embryos and found out 4 embryos of the 8 sent for testing had no result. Aiden and Almira were the first two of the 4 no result embryos we transferred. We then did NIPT testing at 10 weeks gestation and we received low risk of trisomy. We were in the clear so to speak, yet my mom sense feared I wouldn’t be able to bring both of our twins home for them to grow up. Due to our recurrent pregnancy loss we were immediately referred to an MFM for my total OB care and were seen at 13 weeks. We had our anatomy scan at 20 weeks and we were told they weren’t able to get good imaging of one of the twins. We were told they would gather those images in 4 weeks. We never knew anything was wrong or expected to hear such devastating news. At 24 weeks gestation we found out our precious baby girl Almira Rose had holoprosencephaly and we knew we had to meet her. We travelled the following week 8 hours away to get a second opinion in Denver, Colorado. Our worst fears were confirmed the week before thanksgiving, Almira had the most severe form of holoprosencephaly, alobar. We received many different outcome predictions, stating our daughter had a higher chance of being stillborn, or she could possibly have trouble breathing and most likely wouldn’t eat or have a desire to eat. We wanted to ensure Aiden was given the best chance, so we decided to carry Almira to term and bring her home on palliative care. Our journey as a family shifted from where we imagined so quickly.
Our sweet Aly Rose was born with a bilateral cleft lip and palate along with alobar holoprosencephaly. Almira was such a fierce fighter, who took a bottle like a champ. Most surprisingly Almira had normal breathing, normal heart rate, and only few concerns with temperature control. As a result of her brain anatomy she experienced seizures the day she was born and they continue to grow more frequent throughout her life. As we moved forward we learned Almira was our fighting, fierce daughter who we supported during her short journey. Almira passed peacefully the night before she would have turned 3 weeks old on March 6th.
Aiden and Almira were our rainbow babies and we were thrilled we were able to spend three precious weeks as a family of four after their birth. Almira will always be a part of our family and my heart breaks knowing Aiden won’t have his twin sister here physically.
We also did a micro-array genetic testing after Almira’s birth, and it determined her diagnosis was not connected to having trisomy 13. We believe the incidence of her diagnosis was completely random. I add these details because as someone who loves having answers, unfortunately we don’t always receive answers. It’s hard not knowing the cause or how to prevent reoccurrence. I’m beyond blessed to be Almira’s mom, at the same time I also desperately wish I could prevent her condition, and most of all I know she was absolutely perfect how she was.
We decided to add to our family and our precious boy Owen arrived 2 weeks prior to our planned c-section date. Thankfully our MFM was able to deliver early after seeing aminion chorion separation on our 36 week ultrasound which increases chances of placental abruption and fetal demise. We’re beyond grateful to announce our sweet boy arrived 4 days before our planned maternity shoot. So we pivoted and were able to celebrate our sweet rainbow baby’s arrival!
We are so blessed to have Almira in our lives, we desperately wish we could have had her for longer and we were able to watch her grow up with her twin brother Aiden and little brother Owen. Our family will always keep Almira, Baby Ward, and our 3 embryos who couldn’t stay in our hearts and honor them as a part of our family.
Since Almira’s passing the amount of love, support, and hugs has and continues to surprise Kevin and I. We knew our village was big but the outpouring of support means the world. Not every day is easy but I keep getting up and doing my best to give Aiden our best. His pure joy and laughter means the world and yet we know Almira should be here laughing and smiling too. Sending love and hugs to every loss family before and after us. Please know I’m always here and every loss counts and deserves to be honored. From early term loses, embryos who couldn’t stay, babies born still, infants who pass far too soon, to loved children gone too soon. Remember to share about your losses, it keeps them and their memories here and in your hearts!
Photos taken by Steph ReNae Photography, LLC.
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