“That …” said my doctor while pointing to a tiny black and white blinking dot on a monitor, “… is your baby’s heartbeat. This is a viable pregnancy.”
I had just turned 40 and was living on my own in rural Alaska, five years after the death of my first child from brain cancer. Those two sentences are etched upon my heart as likely the best I’ve ever heard.
Motherly love is strong, and losing my first-born daughter Anjuli at age 4 to brain-stem cancer had left me childless, hopeless and aching every day to have her back with me.
This wasn’t the beginning of my journey into single motherhood, but rather the answer to thousands of prayers and a deep intuition that, somehow, I was supposed to have another child. It was a stretch goal, quite frankly, to even consider trying to become pregnant on my own at age 40. The year was 2006; it was soon after my divorce and I was living in a small town I had only just recently moved to in order to fulfill my ex-husband’s dream of living in Alaska.
Motherly love is strong, and losing my first-born daughter Anjuli at age 4 to brain-stem cancer had left me childless, hopeless and aching every day to have her back with me. After five years, the acute phase of my grief had subsided enough that I could begin to hope for a chance to be a mother again.
Coincidentally — or perhaps not coincidentally — one of the country’s best fertility doctors just so happened to live in my same small town. I made an appointment and shared my story of loss. I cried. The doctor cried. And then he agreed to help me conceive a child for free via artificial insemination. I’d only need to purchase the sperm. He connected me with the sperm bank other patients of his had used, and I began my search for a sperm donor.
It’s odd that the infertility field euphemistically calls the act of selling one’s sperm “donating.” After a sperm bank purchases sperm, it resells it at a huge markup to singles and couples trying to conceive.
Given my personal history, my main concern in choosing a donor was to find someone with zero cancer in their family. Nothing mattered more. I spent hours sifting through the online catalog of donors, ignoring everything except health histories. In the end, I found two donors with no known cancers in their families. One was described as being a writer, a college graduate and a taxi driver. Since I’m a writer, I was drawn to his profile. So, I selected Donor number 2008.
Fifth time is the charm
Calling the sperm bank in Virginia was pretty hilarious. Just how do you “place an order” with a complete stranger for the sperm that will possibly help create new life inside you? The representatives on the phone thankfully had a good sense of humor, so the calls usually included a question along the lines of: “Shall we have that gift-wrapped?” Fertility humor is helpful when you have a broken heart and are essentially paying for a dream, while shelling out more than $600 — plus overnight shipping, in dry ice, to Alaska. I was a single person living in the remotest corner of the United States, where good jobs are scarce and money is always an issue — believe me, I was more than grateful for my doctor’s generosity in helping me conceive for free.
At $600-plus per cycle, I figured I could only try six times. But that blinking black and white dot meant my dream came true after just five rounds.
My pregnancy was normal, at least as far as it could have been, given that I was a single pregnant woman living in a small log home in the woods outside a small town in Alaska. There was firewood to haul and stack each week, along with kindling to chop. Seven months of the year I needed to keep the wood stove going to keep the house warm. I had oil to heat, too; the giant red tank outside my kitchen window cost $900 to fill, and I burned that up one January as an experiment to see how long a full tank would last. It was an expensive, one-time experiment.
There also was the well to manage; the pipes to keep from freezing; and the 40-pound bags of salt I had to lug under my house to dump into the water system. The crawl space was just that — a confined area where I had to crawl, and toward the end of my pregnancy I could just barely squeeze between some of the pipes and the house floorboards above.
Cravings were definitely an issue. My pregnancy lasted from late September to early June, meaning there was snow and ice on the ground almost the entire time. Some of those late-night cravings just couldn’t be satisfied, as it was simply too dangerous to make the long drive to town on those dark, dangerous roads. Sometimes, just driving home from work was treacherous. One night proved too treacherous and I accidentally hit a moose I didn’t even see until its back came through my windshield, showering me with shards of glass.
I had to call my closest neighbors, which scared me a little because most of the time I saw them they were smoking marijuana.
Twenty-seven weeks after my moose encounter, and three weeks before her due date, baby Emily decided she was ready to enter the world. She wasn’t due until early July, yet a contraction woke me up Sunday morning, June 10. I believe her sister in heaven had a say in when Emily’s birthday would be so she could transform June for me from forever being the saddest month of the year — the month she died — to being the month her sister was born.
Everyone on my call list for a trip to the hospital that morning did not answer the phone. My doctor was at church. I had to call my closest neighbors, which scared me a little because most of the time I saw them they were smoking marijuana. But it was them or driving myself, which my doctor made me swear not to do. These neighbors had to take their son to work, too, so they asked me to wait while he finished getting ready. On the drive to town, while I had contractions strong enough to make me want to rip the car door handle off, they drove right past the hospital in order to drop him off at work.
Emily was born via cesarean soon after I arrived at the hospital. My doctor showed up with his Bible still in hand. He had broken his hip from falling on the ice the previous month, so he needed a second doctor to assist him in the operating room. It took some time to find one, because it was, after all, a sunny Sunday in June, otherwise known as fishing season. I remember the second doctor telling my doctor right before they opened my womb that he hadn’t “done one of these in a while.” Operating-room humor.
Emily Grace arrived, with a head full of hair and a set of lungs full of screams. The nurses told me later that they could hear her all the way down at the nurse’s station, through two sets of double doors. It was Emily’s way of letting us know she was a strong little one.
Troubling symptoms arouse old fears, are diagnosed
But Emily had medical issues soon after I took her home. She had small seizures, jerky movements and cried almost nonstop. She never slept for more than an hour and a half at a time. The doctors couldn’t figure out what was wrong, and each made guesses that all ended up being wrong — reflux, Sandifer’s Syndrome, and I forget the rest. She started vomiting frequently by the time she was about 15–16 months old, choking a lot and going cross-eyed. She started head-banging a couple of months later. When her symptoms began to look similar to her sister’s symptoms prior to being diagnosed with a cancerous brain stem tumor (called a Diffuse, Intrinsic Pontine Glioma, or DIPG), I begged our doctor to send us to Seattle Children’s, where her sister was treated.
The specialists at Seattle Children’s first ran a series of gastroenterology tests. When all of the tests came back negative, we were referred to the neurology team. She was given a sedated MRI in June 2009, shortly before her second birthday. The MRI took longer than expected. I paced the halls with my best friend. I knew something was very wrong.
Sure enough, I was paged and taken to a separate room away from the main waiting room. Separate waiting room assignments are always a bad sign — they’re where loved ones are given bad news.
Finally, the staff brought Emily to me and I was allowed to get her dressed, even though she was more asleep from the sedation than awake. The first thing the doctor said: “It’s not a tumor.” I was so relieved I felt like I was falling, even though I was seated.
“But we did find something. She has Chiari malformation.”
Chiari malformation is a neural tube birth defect. It occurs when the cerebellum at the back of the brain slides through the hole in the skull and presses down onto the spinal column. Some cases of Chiari are mild and cause no symptoms. Some are more complex and result in several symptoms, including severe headaches, balance problems and vomiting. When the cerebellum presses against the brain stem, as it did in Emily’s case, additional problems can develop, such as issues with swallowing and eye movement, and also problems with the flow of cerebral spinal fluid (CSF).
Emily had all of these symptoms and was vomiting so often that she wasn’t gaining weight. She couldn’t lay flat for more than a minute or two before her CSF would build up in her brain, causing her severe head pain and inducing vomiting. Emily also was not meeting all of her developmental milestones, including balance and grasp.
Eventually, she became so sick she needed brain surgery. One of the doctors on her neurosurgical team had also been one of Anjuli’s doctors. We are the second family he knows where one child died of DIPG and another has Chiari.
Chiari can be inherited. No one that I know of in my family history had or has it. My doctor ordered an MRI for me soon after Emily was diagnosed to rule it out. I guessed it must run in her donor’s family, and figured we would never know for sure.
Emily’s surgery went well, but it was many years before she really started to get well. She required physical, occupational and swallow therapy to help her catch up developmentally. Several times her headaches and frequent vomiting would return, along with crossed eyes, choking and balance problems.
Despite all of Emily’s medical issues, I continued to work full-time to support us. As a single-by-choice parent, I was and am our sole source of income. I took unpaid, intermittent Family Medical Leave Act (FMLA) leave when needed to take Emily to appointments and therapy and for our trips to Seattle Children’s. I basically lived off of caffeine and love for both my girls, one in heaven and one on earth, to keep going, despite almost never getting an uninterrupted night of sleep.
Hope for family connections
Emily turned 4 in June 2011, and she had been doing pretty well for a few months. That summer, I watched a documentary on public television about how a group of donor siblings got to know one another and eventually even met their donor thanks to the Donor Sibling Registry, a nonprofit that helps connect donor-conceived individuals. I cried tears of joy during the film because I realized there was hope that Emily could one day possibly meet any half-siblings she may have. Emily had already begun to ask me for a sister who wasn’t “just in heaven.” She wanted a sister at home to play with and love. I dared to dream about one day meeting other moms like me who had birthed Emily’s donor siblings.
Just a couple of weeks after her fourth birthday, Emily began having more headaches and vomiting again. By fall 2011 she was so sick that her doctors at Seattle Children’s said she would need a second brain surgery. At that point, I knew we simply had to move to live closer to the hospital, as commuting between rural Alaska and Seattle was becoming too much of a strain on both of us. We moved in late 2011. She was hospitalized twice soon after, but then slowly began to get better again; surgery was postponed.
In 2012, I joined the Donor Sibling Registry. Shortly after joining I found another mom living in the Midwest who also used Donor 2008 to conceive her son and newborn twins. I was so excited to learn that someday, perhaps, Emily could at least meet some half-siblings. Both this mom and I agreed that our children were too young to understand all of this, but someday the time would be right.
How on earth does a mom who used to live in Alaska and who got pregnant with sperm from a Virginia-based donor wind up living in the same area as that donor?
Emily got sick again and again in 2013, and the doctors said she would need a second brain surgery. But she slowly got better again and her surgery date kept getting pushed back. Eventually she was doing so well the second surgery was no longer needed.
These days, she’s doing very well and no one can tell what she’s been through. She still gets headaches and occasionally has bouts of vomiting, but at this point she’s a professional at dealing with both. She excels academically and tested into the highly capable program in our school district. She plays piano, enjoys rock wall climbing, and is a Girl Scout.
In summer 2017, a grown half-sibling named Bryce in New York reached out to me. He told me about himself and two other half-siblings, Madi and Alice. They were all going to get together and meet Donor 2008 in Seattle the following week. I was shocked. How on earth does a mom who used to live in Alaska and who got pregnant with sperm from a Virginia-based donor wind up living in the same area as that donor? The idea of ever meeting the donor had never occurred to me. I had signed up for anonymous sperm donation and believed we would never know more about the donor than we already gleaned from his profile.
Emily meets her half-siblings ... and her biological father
Emily had just turned 10 and I worried she was too young to meet the donor. I worried she would immediately want to develop a father-daughter relationship, complete with homework help and future driving lessons. I figured this would be impossible and worried Emily would experience yet another loss in her life. Her first loss was only having a sister in heaven. Now would she mourn having only a donor-dad in Seattle? I wanted to wait until Emily was about 15 or 16.
But I was completely thrilled with the idea of meeting her half-siblings. Also exciting was the idea of meeting one of the moms, who, just like me, selected Donor 2008 to bring a child into the world. We quickly made plans to meet at Seattle Center on a beautiful sunny Sunday afternoon.
It was a great meeting. I found myself instantly loving all three of Emily’s half-siblings in some sort of disconnected, motherly way. Bryce, Madi and Alice are all amazing individuals, and each was so kind to both of us. Emily seemed to click with Alice instantly and within a half-hour the two were talking on their own near the International Fountain at Seattle Center.
Jessica, Alice’s mom, was there, too, and I enjoyed talking with her. She shared with me that Alice has a sister, Soren, by the same donor. They are no longer allowed to see Soren because Jessica’s ex-wife, who is Soren’s birth-mother, ended all contact with them without warning or explanation. My heart broke at this news and we are all incredibly sad about this difficult situation. I lost my daughter due to cancer. Jessica and Alice lost Soren for an unknown reason none of us can fathom. We know that someday they will be reunited, but that day can’t come soon enough.
Recently, the opportunity came for Emily to meet her donor, Aaron, in person. Even though it had only been just over a year since she first met three of her donor siblings, I felt the time was right. She had learned about human reproduction and we were comfortable talking about sperm and sperm banks. She’s mature for her age and our small family is strong, so I knew meeting her donor wouldn’t likely lead to unrealistic father-daughter expectations.
When the big night came, I felt really comfortable meeting Aaron, formerly known as Donor 2008. His calm, gentlemanly and unassuming manner put everyone around him at ease. He takes care of his elderly mother, and it was nice meeting her and pretty special for Emily to become acquainted with her biological grandmother.
When Emily finally met Aaron, he was smiling from ear to ear, so I knew he genuinely was happy to meet her. She was nervous, but his at-ease demeanor made her feel calmer, and soon they were engaging in the kind of intellectual chit chat that Emily loves. We learned he likes to play chess, which Emily loves, but I do not.
Having lost my firstborn, I treasure every relationship. Love expands, and there’s always room in my heart for more.
Now we know of 10 donor siblings so far, and Aaron has calculated he may have as many as 67! He and Jessica, Alice’s mom, are in a relationship now, and the four of them are living in a co-op with Madi, who joined them after moving from Virginia. Bryce recently joined the military.
Emily and I look forward to meeting as many donor siblings as everyone involved is comfortable with. A couple of the moms and I are Facebook friends and it is wonderful seeing the photos of these beautiful kids growing up across the country. It may sound strange, but it really is fun to get to know these wonderful children who share some of my child’s DNA. The vocabulary gets tricky sometimes (should we say “half-sister” or “father”?), but we all understand that we are stretching definitions and sometimes new vocabulary is needed. For a little while, Emily referred to Aaron as her “donor dude,” but now she’s decided that Aaron is the best name.
I’ve been asked if I’m “really up for meeting all 60 other donor children.” My response? Of course! Having lost my firstborn, I treasure every relationship. Love expands, and there’s always room in my heart for more.
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