At the end of October we received an email in our Loving Leah email account, with the subject line "SRPS." The contents validated why we continue this blog, but they made us terribly sad. In the message we learned of another family who had recently received a diagnosis of probable SRPS. Eric and Erin learned that something was wrong at their 20-week ultrasound. They originally were told their son, Evan, had TD (a non-inherited lethal skeletal dysplasia), but the doctors at Cedars believed they actually had SRPS without the presence of polydactly. Thanks to the amniotic fluid, the doctors could see the baby well, and both the specialist in their hometown and those at Cedars were able to look at their ultrasound pictures.
When we first "met" Eric and Erin, they were 24 weeks pregnant. They hoped to spend some time with Evan in their arms, just as we had with Leah. We emailed about gentle delivery techniques, how long they might be able to carry him (those of us carrying babies with negative diagnoses have a higher rate of pregnancy complications), and how to cope in the meantime. I was so impressed by their commitment to their son, and their openness with us. It was a pleasure and a privilege to connect with them. I felt bad that we weren't able to offer them more support, but we were swamped with adoption paperwork and only barely handling our own grief.
Erin had a healthy pregnancy, and Evan stayed strong the entire time. They ended up delivering on Thursday, January 22. I knew they were headed to the hospital, so I waited impatiently for updates all weekend. Jeff and I were praying that Evan would survive labor and have time with his parents and big sister.
On Monday morning we got another email, entitled: The Doctors Were Wrong!
Evan not only survived labor, he was still going strong, at home, with no respirator. In fact, their doctors told Eric and Erin a mistake had apparently been made. Evan has dwarfism, but not the lethal variety. They predict he will have a "normal" lifespan.
That is why you fight for your child.
Eric and Erin thought they were fighting for a few precious minutes, but in reality they were fighting for a lifetime.
They believed they carried Evan for a chance to kiss his cheeks, whisper in his ears, and cuddle him as he passed away. Now they will do those things every single night as they tuck him into bed.
It is no easy thing to carry a baby when you know that baby won't survive after birth. The sacrifice Erin and Eric made for their son had benefits their doctors didn't anticipate. They have a son, and they get to keep him.
Seven percent of babies diagnosed with a lethal skeletal dysplasia actually have non-lethal forms of dwarfism. We are so thankful that in this case the misdiagnosis happened to a couple that cared about meeting their baby so much.
They "chose life" and they received it. How fitting.
Read Evan's story from their perspective: evans-story.blogspot.com
When we first "met" Eric and Erin, they were 24 weeks pregnant. They hoped to spend some time with Evan in their arms, just as we had with Leah. We emailed about gentle delivery techniques, how long they might be able to carry him (those of us carrying babies with negative diagnoses have a higher rate of pregnancy complications), and how to cope in the meantime. I was so impressed by their commitment to their son, and their openness with us. It was a pleasure and a privilege to connect with them. I felt bad that we weren't able to offer them more support, but we were swamped with adoption paperwork and only barely handling our own grief.
Erin had a healthy pregnancy, and Evan stayed strong the entire time. They ended up delivering on Thursday, January 22. I knew they were headed to the hospital, so I waited impatiently for updates all weekend. Jeff and I were praying that Evan would survive labor and have time with his parents and big sister.
On Monday morning we got another email, entitled: The Doctors Were Wrong!
Evan not only survived labor, he was still going strong, at home, with no respirator. In fact, their doctors told Eric and Erin a mistake had apparently been made. Evan has dwarfism, but not the lethal variety. They predict he will have a "normal" lifespan.
That is why you fight for your child.
Eric and Erin thought they were fighting for a few precious minutes, but in reality they were fighting for a lifetime.
They believed they carried Evan for a chance to kiss his cheeks, whisper in his ears, and cuddle him as he passed away. Now they will do those things every single night as they tuck him into bed.
It is no easy thing to carry a baby when you know that baby won't survive after birth. The sacrifice Erin and Eric made for their son had benefits their doctors didn't anticipate. They have a son, and they get to keep him.
Seven percent of babies diagnosed with a lethal skeletal dysplasia actually have non-lethal forms of dwarfism. We are so thankful that in this case the misdiagnosis happened to a couple that cared about meeting their baby so much.
They "chose life" and they received it. How fitting.
Read Evan's story from their perspective: evans-story.blogspot.com
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6 comments:
How great that you and Jeff were able to give them the support they needed thru the pregnancy. And, I am so happy that their little one is okay.
We barely did anything...just emailed and prayed. There was another SRPS family close by that really supported them. It's still so fresh for me that I don't feel like I have that much to offer...so we do what we can.
Weird- Amy posted that one not Jeff. I seem to be logged in as him.
Hey...sometimes all it takes is prayers!
Amy - Thank you for posting this. I added your link (don't know where it went) and Eric's to the new blog. It's addy is http://knoahsarc.org. I created a section for SRPS. Keep educating!!
Wow, that is such an amazing testament the fact that, while doctors are helpful, they aren't always right and it is so crucial to give a child every opportunity rather than selling them short while still in the womb. I'm glad you were part of Evan's family's love and commitment to him!
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