We officially have our third girl in the Shrader house! We had our anatomy scan yesterday and nothing has changed with the prognosis; the baby still has a fatal condition. Nothing has changed with the way we will approach her life; we will continue to have faith that her life is meant for good and we will grant her the dignity of telling her story. Right now her official diagnosis is acrania (severe form of an open neural tube defect); this may change and evolve over time to anencephaly. I mentioned the difference in the blog before this one, and you can read that here.
Babies with acrania/anencephaly tend to be blind, deaf, unconscious and unable to feel pain because they may just have a rudimentary brain stem. I am relieved to hear that Layla will not feel pain in my womb or here on this earth. She is in the warmest, safest place to be now and soon after birth will be fully healed without pain in Jesus’s arms.
I have been doing research on neonatal organ donation, because that is something our family would like to pursue with Layla’s body, if possible. Babies on the organ transplant list have very little chance to get the transplant they need, because it’s so rare to have a baby die outside of the womb with viable organs. 30 to 50 percent of children younger than age 2 who are waiting for transplants die before an organ becomes available. There are many restrictions for the donor such as weight, suitable organs for donation, oxygen levels at birth and brain death. Organ donation for acrania/anencephalic babies are an ethical conversation the parents of the baby and their doctor/organ donation specialists can have prior to birth.
Babies with acrania/anencephaly may not have adequate brain stem function after birth, which maintain spontaneous respiration and heart rate. If the oxygen levels aren’t normal right before brain death, the organs start to die. By the time brain death occurs, the organs undergo damage and may not be suitable for transplantation. Here are some articles arguing the ethics of organ transplantation in these babies here and here. Babies with acrania/anencephaly rarely donate organs, because most are underweight and a large number are pre-term due to large amounts of amniotic fluid causing preterm birth. There are more successful attempts at donating tissue for transplant and organs for research. We are not interested in extraordinary means for Layla (such as intubation and ventilation) only to keep Layla’s organs intact for donation. However, tissue donation is less time sensitive (1-2 hours after cardiac death all the way up to 12 hours after), we would not have to use life saving measures and could spend more time with her, even after her death. There’s also the option to donate organs to research so that many future lives can be saved through study.
I may have to have a C-section in order to donate her organs/tissue and the urgency of organ retrieval may limit the skin-to-skin contact we would have and the opportunity to spend much time with her alive. Duke is one of the premier research centers for open neural tube defects, including anencephaly, so I feel that I can help contribute to research for a cure someday regardless of donation. You can read about the different types of donation here. We currently have several doctors and counselors helping us navigate the donation possibilities. We may change our minds along the way because, as you can see, it’s not a simple or easy decision.
We aren’t going to be devastated if we can’t donate Layla’s organs/tissue. There are so many hoops to jump through, but we are going to pursue it even if there is a small chance. Regardless, Layla’s life has value whether or not she can donate tissue/organs. I didn’t get a chance to hold Cora while she was alive and I’d very much like to hold Layla alive. I’d love for Aben and Lydia to meet their sister in the hospital, and whoever else wants to meet her. Aben told me the other day that he was upset with me that he never got to meet my baby (Cora) and she’s in Heaven now and he can’t get to her. At the time of this blog post, we have not told Lydia and Aben that I’m even pregnant. This conversation will happen soon and we need to be covered in your prayers. I am in a Facebook group full of mothers who have been through this exact scenario, and they have assured me their children took the news much better than they thought and they were a source of joy in the midst of the pain.
Layla’s ultrasound yesterday showed that all of her other organs are developing normally. I haven’t posted her brain defect on social media because I want to give her dignity. She is not only a baby with acrania, she’s a baby worthy of love and adoration. I do feel like I want to share those pictures here so that people understand that even though it is disturbing to see, Layla is precious and beautiful in the eyes of God.
Here are a few of her ultrasound pictures and a video of her crazy movements:
Again, we would love to be covered in your prayers. Here are specific prayer requests:
- The conversation we have with the kids will happen very soon. We need wisdom and guidance to present this news in a way they understand with hope.
- We will be pursuing tissue donation for now. There are gestational age requirements (36 weeks) and weight limits (6, 7, 8 lbs depending on the organization) to donate tissue. We will be bombarded with hard decisions and information throughout the pregnancy. Pray for discernment.
- I could develop polyhydramnios in my pregnancy early enough to develop mirror syndrome or pre-eclampsia and it could be dangerous for me to continue the pregnancy. We may have to decide to deliver early, even if she is doing well.
- It’s very difficult to be working at a high risk OB clinic during this time. I can’t take a break from thinking about Layla’s diagnosis. I experience grief and joy with my patients’ babies and it can be hard to function. I’m starting to show and dreading the conversations this will bring up.
- The holidays are coming up, which are already a hard time for me, but now it’s a reminder of the absence we will feel next year without Layla.
We are grateful for all of the support we have received since the last blog post. I am excited to finally reveal her gender and her name. Please use her name often. We probably need help at times, but we don’t even know what to ask for. Thankfully, we have a God that knows our every need and gives us way more than we deserve.
Romans 8:26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
With love and gratitude,