After a healthy pregnancy and normal labor that ended in a non-emergency caesarean, Alma was born without a heart beat.
Doctors spent 17 minutes resucistating her. We were able to spend just a few minutes with her before she was transferred to the nearest hospital with a NICU, where she was to spend the next month.
She was cooled for the first three days, a hypothermia treatment that reduces the brain damage that occurs when a baby is deprived of oxygen. During those first three days we could see her but not hold her. She was intubated and covered with monitors to watch for seizures and keep h stable.
After three days they slowly warmed her back up and extubated her to see if she could breathe on her own. It took a few tries and a couple of weeks but eventually she came off of breathing support.
During her NICU stay the doctors discovered that Alma has a set of anatomical abnormalities consistent with VACTERL association- a nonrandom association of birth defects. Hers are a tethered spinal cord, a dilated aorta in her heart, and an imperforate anus.
Once she was breathing the next step was eating- she’d been fed through a tube straight to her intestines because of a concern that she might be aspirating, and another set of tests was needed to make sure she knew how to swallow and that her vocal cords are working as they should. Her tube was moved to her stomach and then she started taking bottles- just a few drops at first and eventually enough that she moved to a transition unit in the hospital. She stayed there for another week, we removed her tube as she proved she could eat enough by mouth to come home.
On October 18 we brought her home. She is medically stable, and we don’t yet know what the effects will be of the severe oxygen deprivation at birth. The neurologist tells us that what they see on her mri is not predictive of her outcome; it can be a hint but it’s not a diagnosis. What is on her mri is extensive damage to two of the major motor areas of the brain, putting her at extremely high risk for cerebral palsey.
She will have two surgeries before she turns one, one to rebuild her rectum and the second to untether her spine. They’ve also recently seen a kidney stone that will possibly need removing, not an easy thing to do in an infant. She is at increased risk for seizures and even normal sicknesses carry extra danger for her.
While we don’t know what Alma’s life will look like long term, we’re very grateful that she is alive, able to breathe and eat and move her body. Our lives have been changed forever. There’s a lot of emotional work to be done for all of us to heal and at the same time having a baby at home is it’s own work. Her care is being managed by many different doctors and so we end up back at the hospital every week.
I (Chaya) is taking time off from teaching yoga and her job at the local library, and Adam is working a reduced schedule so that we can take her to her many doctors appointments and therapies.
At our friends urging, we are reaching out at this time to our community in the hopes that your support will take some of the uncertainty out of our financial future.
Thank you to all the people who have helped us already, with food and gifts and all types of kindness. We so dearly appreciate all the support we have already received, and are incredibly grateful to you for reading this far and for your help.
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