Today we celebrate an angelbaby named David. He was lost long ago, but is still loved, honored, and remembered. Rebecca’s story touches me in ways many of the others haven’t, simply because of the length of time it’s been for her. Rebecca has been without him for over seventeen years and still loves him like the day he was. I’m honored that she is allowing us to celebrate his life with her.
by Rebecca Juelke-Lewis
1. How long has it been since you gave birth/been diagnosed?
17 years on March 23.
2. How and during what stage of pregnancy was your child diagnosed? How did you react?
It wasn’t diagnosed until I was in labor as it was the 1st ever case where I was from. I was devastated when I was told my child wasn’t going to make it.
3. Do you know what caused the defect for your case?
I lack folic acid completely.
4. Did you ever consider terminating? Why didn’t you?
No, even if I would have known before labor I still would have carried him full term.
5. Would you change anything about your experience?
I would have held him and loved him more.
6. What was your favorite moment while being pregnant?
Feeling his kicking.
7. What was your favorite part of meeting your child?
Knowing that was my son and that he was so strong.
8. Is there any special meaning behind your son/daughter’s name?
He is named after his grandpa.
9. If you could tell anyone anything about your child, what would it be?
That he saved 2 babies by being a donor and is a true hero.
10. Birthdays!! How long did they live? Born sleeping?
He lived 10 hours.
11. Do you belong to any support groups that have helped? Any that didn’t?
I belong to a few anencephaly groups and I am a mother to an angel. As these weren’t around when my son died, I am a part [in these groups] to try to help other mommies. I was in counseling for 2 years.
12. What were your most effective coping mechanisms?
Talking to my counselor and writing letters and poems for my son.
13. How did it affect your relationships; marriage, family and/or friends?
It brought our family closer.
14. How do you want them to be remembered?
As my very own super hero.
15. What’s your favorite keepsake?
The two pictures I have of him.
16. What do you want everyone to know about Anencephaly/Acrania?
That it can happen to anyone no matter what precautions you take and that the mom didn’t do anything wrong.
17. What dreams and hopes did you have for your child?
To be someone special and do good for the world.
18. What kind of things did you do to bond with your child?
I stayed by him his entire time alive and talked to him as I did when pregnant.
19. Did you have a baby shower or celebration of life? What was most exciting about it?
20. Did you or do you have any other children? How has this loss affected them? Did they ask any questions? If so, what were they?
My boys are both rainbows and they are very much aware of their brother and when they ask questions I don’t hesitate to answer. They ask what he looked like and why god took him.
21. How do you incorporate your son/daughter into your lives and the lives of your family?
I always talk about him.
22. Did you have twins? Were both Anencephalic? How did having twins change your bonding? How do you cope seeing one twin and not the other?
23. Were there any unhelpful comments made to you? If so, what were they?
You are young, you can try again, maybe it just wasn’t meant to be, god always has a plan, you will get over it.
24. In what way would you want to inform the world of your child or Anencephaly/Acrania?
I just wish more people had knowledge about this defect and how common it really is and strikes all races.
25. Do you run a blog, Facebook page or other support or organization? If so, what do you hope to accomplish with it and how has it benefited you? Links?
26. Were you able to keep your child with you after they passed? How long? What do you cherish the most about that time? i.e. their toes, eyelashes.
For about an hour, I loved his feet and his smell.
27. In what part of the world are you in? Have you met any other mother’s who’ve lost their child to this?
California and yes, one.
28. If you’ve lost more than one child to this, how did one experience change from the other?
Only had one loss.
29. How do you celebrate your child’s birthday?
We light a candle, release balloons.
30. Mother’s day is soon, how do you celebrate? Is it difficult for you and in what way?
It was until my rainbows came. Now I actually celebrate with my kids.
31. Have you published any news articles or gained media attention? If so, would you mind sharing your experience and links?
32. Did you do neonatal donation? How has that helped you?
Yes, it has helped me go on by knowing my son DID make a difference in this world.
33. Were you able to pump and donate your child’s milk? Why did you choose to donate or why not? How did it help you?
No, they didn’t do that type of thing when I had my son and where I lived so I had milk for 4 years.
It’s amazing to think of the advancements the medical field has made since 1999. Not only are ultrasounds more routine and able to detect this defect sooner, many more babies are able to donate! David being able to donate saved two precious babies and paved the way for other child loss parents to honor their kids; saving others from the loss they themselves just went through, not only Anencephalic/Acrania babies.
David’s story touches me so much because his mom didn’t know what would happen when he was born. He was born at a time when we didn’t know as much as we do now, when there was little to no forewarning about Anencephaly/Acrania, yet she still stands strong and helps other mothers who receive this diagnosis. I couldn’t imagine going through an entire pregnancy being unaware of this defect and having my baby pass away. Especially only having two pictures, Polaroids, of her beautiful baby David. She is truly a warrior to have endured such a difficult time in her life while still holding on to her desire to help others.
**Due to a busy schedule, the Spanish translation is not up yet. I will update it soon with the translation as soon as it becomes available. Thank you for your patience.
-Nicole and Mora