Like many women, I had not found Mr. Right, and my biological clock was ringing loud and clear. I was 40 years old and realized if I wanted to become a mother, it was now-or-never. Perhaps selfishly, I wanted my own biological child. As a special education teacher, I had taught many emotionally disturbed children who had been adopted. I figured if I had my own child, I would at least know half of his/her genetic background. The other half had to come from someone male, obviously, so I decided to use an anonymous sperm donor. At least he would have been screened for STDs and a few other genetic disorders. It seemed safer than having an “accident” with someone I hardly knew. I didn’t know if I was doing the right thing, having a child without a father, so I left it up to God. I made a deal: I would try three times, and if it was meant to happen, it would. I did not realize at the time how difficult it can be for a 40 year old woman to conceive. My odds were about 5% per month.
I did my homework and discovered a sperm bank in California that appealed to me. It still is the only non-profit sperm bank in the US, and it limited a donor’s offspring to 10 families, which I thought was very responsible. Also, they were the only facility at the time who offered “Yes” donors-meaning that the donor was willing to be identified when the child turned 18. I thought it was important that my child be able to know the other half of his/her identity. My mother, who was always my personal cheerleader, and I went over their catalog and chose five “Yes” donors and one back-up “No” donor. All of the other “Yes” donors were either short and/or chubby, and as my body tends toward chubby, I wanted to give my child a chance to inherit a better body!
Being 40, my doctor felt it was important to test my fertility. He put me on Clomid to do a “challenge,” to see if my old ovaries responded well. The chance of my having twins was increased by encouraging my ovaries to produce more than one egg, but I decided to take that chance. I called the bank to order the sperm, only to discover than the five “Yes” donors were out-of-stock. Being reluctant to give up so soon when I was primed and ready, I ordered the “No” donor’s sperm. He was over six feet tall, slender, blonde, blue-eyed, and had a master’s degree. A woman at the facility told me he was “very popular.” Two vials are usually needed to perform insemination on two consecutive days, but only one was available. I paid for the sperm and delivery on dry ice by FedEx, thinking it probably wouldn’t work anyway. I’d try to get a “Yes” donor next month.
Again, my doctor wanted to do additional testing, which would have cost me additional money I could little afford. I explained that I had never failed to conceive, so I wanted to try with as little medical intervention as possible. I used an over-the-counter ovulation predictor, and went to the doctor’s office early on a Monday morning for the intrauterine insemination. The nurse had me identify the vial of sperm by the donor’s number, then I was told to walk the sperm to another office to have it washed and readied for the procedure. Walking down the hall with a vial of sperm in my hand, I had to chuckle. It seemed such a strange thing to do, but it was for a good cause! Some time later, I returned to the doctor’s office, was told to lay on a table, and the doctor inserted the sperm into my uterus with a vial attached to a tube. It was only mildly painful. He then raised my hips and told me to lie still for 15 minutes. I thought about my hopes for my potential baby. If God trusted me with a child, I was determined to do the very best by that child, to make sure that he or she had all the love a child would ever need.
Two weeks later, my normally 26 day cycle had not produced a period. I took a few pregnancy tests, and each one came out negative. Undeterred, I went to the doctor’s office early on the 29th day. By that afternoon, I was informed that I was indeed, “Very pregnant.” It seemed unreal, getting pregnant on the first try with only one insemination. This baby must have been meant to be mine! I felt like this child had been “waiting in the wings” for so many years, it was time to get the show on the road!
My mother was thrilled, but the rest of the family took a day or two to adjust. Everyone assumed that I would never have a child of my own, and I had not discussed my plans with them. Soon enough, though, they all became excited about the new member of the family.
My pregnancy was routine until my 16th week when my blood pressure began to rise. I was showing signs of preeclampsia, a disorder where the mother’s blood pressure rises to dangerous levels and the kidneys begin to spill protein into the blood. My mother and grandmother had similar difficulties, and they were much younger than me when their children were born. I was monitored closely, but by my 27th week I was put on hospital bedrest at George Washington University Medical Center in Washington, D.C. By the 32nd week, my protein leakage was up to 20 grams per day, an amazing amount. One resident said, “She’s peeing a steak a day!” There was fear that I would have a seizure which could lead to my death and the death of my baby.
My team of friends and relatives arrived at the hospital, and I was given a c-section. My little boy came out screaming, weighing 4 lbs. 5 ounces and 15 inches long. He looked so perfect, just smaller than usual. The doctors gave him the “Cute Baby Award.” After three weeks in intensive care, suffering Respiratory Distress Syndrome and an open valve in his heart, my son Tyler was able to come home. The two of us began our lives together.
Tyler was a good baby, though reluctant to sleep. He seemed like he didn’t want to miss anything. I noticed that he found some things intolerable: the sound of the fan in the bathroom, the mall, certain foods or smells. As he grew, these peculiarities grew to include sock wrinkles, shirt tags, shoelaces, and any number of things that had to be just right before he could be consoled. When he started daycare, he had problems getting along with peers. Everything and everybody had do things his way or he would have a temper tantrum. He would not notice that other children had their own feelings and opinions. At home, he was affectionate and showed signs of empathy. With others, he was oblivious. We went through a new daycare about every six months.
In school, Tyler continued to have temper tantrums when things didn’t go his way, getting sent to the principal’s office on more than one occasion. He was even suspended for his bad behavior. The school and I devised a behavior contract that seemed to help, and I took Tyler to a variety of doctors and therapists, trying to find out why he acted out. I was beginning to feel exhausted and frustrated that I could not fix what was upsetting him. By the age of five, his doctor began mentioning Asperger’s syndrome, a neurological deficit on the autism spectrum. Some people call it “high functioning autism” because it does not include difficulties in language development or intellectual ability. Children with Asperger’s have average or above average intelligence, often scoring high in verbal abilities, but lack social awareness and the ability to understand that others have feelings that are different from their own. They appear awkward in public, thus often the brunt of bullying in school. They can appear to have a multitude of additional difficulties such as ADHD, OCD, generalized anxiety disorder, developmental motor delays, and processing delays. We tried various medications, settling on those that addressed the attention and anxiety. He began working with therapists in social skills, speech therapy, physical therapy, and occupational therapy, as well as participating in gymnastics, karate, and soccer, trying to make him comfortable in his own skin. He was bullied relentlessly in school, requiring a transfer before the 8th grade. Gradually, he found it easier to make friends and fit in socially. By high school, Tyler had dozens of friends and was quite popular. He still had issues with attention and anxiety, but those were being managed. I sighed a HUGE sigh of relief!
I had joined the Donor Sibling Registry in 2006, an on-line database of donor conceived children and their parents along with donors who have posted their own information. We eventually connected with the mothers of five other half-siblings. None of them expressed an interest in meeting Tyler, which was very disappointing. I did learn that one of the five was a boy with Asperger’s, like my son. I also learned through their mothers than when the donor was limited to a total of 10 children by my sperm bank, he went to another in the same city and had 26 more known offspring.
When my son was 15, and I had the summer off, I decided to see if I could locate Tyler’s biological father. The sperm bank had given me some basic information. I knew he was in Delaware when in college, and that he moved to the west coast after graduation. I knew his degree in grad school, and that he was part of an internship program. Public information I was able to obtain included the photos of five men in that program during the years “James” was in school. Looking at the photos, I recognized him right away. He had my son’s face! I now had a name, so I looked him up on public search engines online, and sent him three photos of Tyler through the years along with our contact information. We did not hear back.
Eighteen months later, I was researching the family on Ancestry, and was contacted by the donor’s sister. She knew about the donations, and she warned me about a genetic disorder that had recently been discovered. Her mother and three brothers had all had aortic aneurysms in the last few years. The donor’s aneurysm had actually dissected in 2007, which is fatal 95% of the time. That is how John Ritter died. The donor had also suffered a stroke when his carotid arteries tore and not enough blood was getting to his brain. Amazingly, he survived. Both he and one brother had also had their aortic values replaced. The donor also has Asperger’s syndrome, which he passed on to my son and one other child on the DSR.
The sperm bank had not notified me because they did not know. No one knew about Asperger’s back in the early 90’s, and they considered him polite and well-spoken. They didn’t know about the defect in the connective tissue of the aorta because James said it never occurred to him to notify the three places where he donated, resulting in 36 known children. The sperm bank never asked for medical updates. No sperm bank in the US seeks regular medical updates, and some even refuse to pass on information they receive. While his family had encouraged James to report the aortic defect, he never did.
Thinking I should get a baseline of Tyler’s aorta, I took him to Johns Hopkins in March 2010 for an echocardiogram. There he saw the country’s most famous geneticist, Dr. Hal Dietz, who also specializes in diseases of the connective tissue in children. After the echo, Dr. Dietz informed me that Tyler already had an aortic aneurysm only 6 mm smaller than James’s when he suffered the dissection. We did not want to wait for it to become an emergency situation, so Tyler had open heart surgery in June 2010, at 17, to replace his aortic root with a Dacron tube. He should not need further surgery, but he must be followed for the rest of his life with annual echocardiograms, MRAs, and he must take medication to protect his aorta. Since the DNA causing this defect is unknown at this time, no one knows if it might impact other body systems. Two universities are currently doing research to isolate the DNA that is involved so future generations can be tested. The donor’s family and the impacted children have contributed their DNA.
I informed the sperm bank I used, and then I informed the donor’s cardiologist. James had not told his doctor that he had been a sperm donor, but when asked, he agreed to the doctor sending a report to the three facilities where he had donated so that all families could be contacted. Of the 36 known children, approximately half will inherit this defective gene. Indeed, one of the other five known children on the DSR also has an aortic aneurysm. Not all mothers report their pregnancies to their sperm banks, so no one knows for sure how many children the donor has fathered. Some of the facilities he used have tried to contact all the people who purchased his sperm.
So I’ll get to the point of my story. I am forever grateful for the sperm bank industry for the opportunity to conceive my son, but I have a problem with the general lack of responsibility. Most facilities are in the business to make money, and they will sell sperm even when they are aware that there may be medical issues. They will wait until more children are affected by the same inherited disease before they consider it serious enough to report. They do NOT seek out medical updates, and even when donors have attempted to update their information, they have been turned away. Most facilities do not have donor limits, or do not stick to the limits they report, often allowing donors to accumulate as many as 150 children. If there is a medical issue, numerous children can be impacted before any action is taken to limit the donor’s offspring. When we use a sperm bank facility, we are trusting them to act responsibly with all aspects of their business: to limit the number of offspring, to seek updated medical information, to notify all possible parties involved when a medical issue is reported with even one child, and to maintain contact with donors and families of the donor conceived in the case of medical issues. Donors need to be required to report medical issues as they appear or be held personally responsible and liable, anonymous or not.
A recent law in Washington state requires donors to give updated medical information and identifying information when their offspring turn 18, but donors are allowed to opt out of giving identifying information. In our case, 18 may have been too late; my son may have suffered a dissection of his aorta by that age. This law is a step in the right direction, but it doesn’t go far enough, and it is only one state. Wendy Kramer, founder of the Donor Sibling Registry, has tried for years to get sperm banks to adopt regulations for the good of their clients, to no avail. Efforts have been made to involve legislators, with no success. The sperm banks have money and lobbyists to fight any proposed regulation. They are making money, and they don’t want to limit themselves in any way. It is up to the media to spread the word about this lack of regulation, and to demand better accountability. The US government doesn’t care to get involved, and the sperm banks won’t correct their mistakes until there is enough public outrage to force them to change.
On a personal note, Tyler is a freshman in college, in love, and doing well. The donor and his family welcomed Tyler into their family for a while until James became uncomfortable with the perceived role of “father.” We are no longer in contact with any of them, which is a disappointment to Tyler. Still, he is glad to know where he came from, and I am relieved to have forewarning of a genetic medical condition that could have been fatal, however I had to find out.
