At 20 weeks gestation, our son Palmer was diagnosed with anencephaly. There was no guarantee to the time we would have with him. I could miscarry, he could be born still or he would survive a term birth. If he did survive birth, he could survive minutes, hours or several days. Through the sonogram, we found that the extent of his defect was pretty severe as his head was open from above the eye brows to the bottom of his neck. I was content to cherish whatever time we were blessed with. Reality meant saying hello and goodbye could possibly be said in the same breath, but we would say it while he was in our arms.
Two days after the diagnosis, we made the decision to contact our local transplant network. Tissue donation for an anencephalic baby is controversial. Each state determines through legislation if it is allowed. The only way to know is to contact your states transplant network. With that in mind, each state has different allowances as to what can be donated and the criteria that needs to be met. Organs in a newborn are too fragile to transplant as a whole. Heart valves, liver cells and corneas are the common tissue allowed. There is typically a minimum gestational age and weight the baby must meet. Harvest of tissue must also take place within a certain time after the last movement is felt or loss of heartbeat on fetal monitoring.
Making that first step to contact your local transplant network can be difficult. I made my initial contact by email. Again, each website is managed differently, and a phone call or letter may be needed. If this is emotionally or mentally difficult, enlist a friend or family member to help. Family and friends were always asking what they could do for us and I am sure you have found yourself in the same situation....take them up on their offers and ask them to gather information for you. Our network was available 24 hours a day to my husband and I as well as any family or friends that had questions. They were never pushy or forced us to make any decisions. Caring and compassion was the first and lasting impression they left.
In the tab State by State Website Contacts you will find direct links to contact each states transplant network. Websites do change, but on each page there should be an email, phone number or mailing address to contact. If a site does change, please contact me and I will research and assist you in whatever way possible.
In the tab Sample E-mail you will find a sample of the initial email I sent to my transplant network. I struggled with what to write but found that it doesn't need to say much.
Palmer's heart may have beat for only 55 minutes after he was born, but in that short time, he taught me how precious life is. Donation became my ray of light on my darkest days. I knew modern medicine could not make my son whole. But what about those children who can thrive through modern medicine? Through donation, you can give another child the gift of life. Each criteria milestone we celebrated knowing we were one step closer for another family. For Palmer, tissue harvest had to start within 12 hours of his last heartbeat. We chose to give him over to the harvest team a little over 4 hours after his death. We knew the sooner he left us, the sooner another family would receive 'the call'... the call that valves were available for their child. We tried to imagine the pure joy these families would feel. Palmer continues to leave his ripple long after his death.