Meagan was our fifth child, so ultrasounds were nothing new to me. I remember seeing the solid black in the picture of her head on the screen and having a hunch something was not right. Turns out my gut feeling was correct.
20 weeks into my pregnancy, our unborn daughter was diagnosed with severe fetal Hydrocephalus. The cerebral spinal fluid was gathering in her head where brain tissue should have been. What tissue was left, was under immense pressure, which grew by the day as the fluid continued to gather. It is fatal if untreated, but the treatment could not be done until after birth. I was immediately asked if I felt I should continue my pregnancy, followed by a grim “counseling” session from the genetic counselor. I knew of course I would love my daughter no matter what, but even so, I felt my heart, and my world, come to a stop.
The night we got home, I frantically searched the internet for any and all information I could find on my daughter’s newly diagnosed condition. I wanted to read something that showed me the Perinatologist was wrong. The more I read, and the more scan pictures I compared to Meagan’s scans, the more I realized the diagnosis was not a dream. Almost everything I read was “doom and gloom,” but the one thing that was a common thread in any article was the prognosis. In a word, prognosis was “unknown.” It could vary greatly for every child depending on how much quality brain tissue was salvaged from the damage. I began shifting my focus on the internet to any new Hydro research that could help Meagan’s prognosis. I knew her life and future was in God’s hands, but, I also knew God gave us the wonderful gifts and talents we have so we can help others. I thought, maybe, there was something out there that could at least give Meagan a better shot at being the best she could be.
I remember distinctly my feelings when I found out about a Hydrocephalus study happening at Duke Children’s. The reason I remember these feelings so clearly really comes down to two words that stood out to me in the article; stem cells. I felt elated at the prospect of Meagan being involved in a Hydro study and possibly giving her a better chance in the future, but at the same time I felt a knot in the pit of my stomach because I needed to know more about how the stem cell aspect of the Hydro program worked. I immediately felt conflicted – almost sick to my stomach. I had found the one glimmer of hope for Meagan’s future, but knew if there were any ethical questions surrounding the stem cells to be used on her, I had to re-examine our involvement. I obtained the doctor’s email through another Hydro family I had “met” online. I emailed several questions I had about the program, and waited. The wait for my answers seemed like an eternity. The doctor was actually very efficient in her response time, but, when waiting for news with such important consequences, the minutes can seem like days.
It probably seems crazy to some that I would even consider turning down such an opportunity for my daughter. But I was prepared to do so if it turned out the cells were altered in any sort of unethical manner, or if any embryonic cells were used along the way. I won’t sugar coat my feelings at the time – I certainly felt if any thing negative surfaced from my inquiries and I had to decline involvement in the program, my daughter would be cheated again. She was cheated out of her health, and now she would be cheated out of the one program that offered a glimmer of hope. But at the end of the day, my obligation to my daughter was to help her, and trust in God through the amazing faith He had given me, without crossing ethical lines to do so.
The much anticipated email came from the doctor. I felt like a huge weight had lifted off my shoulders. Meagan would receive her own cord blood stem cells, plain and simple! There was no alteration of the cells or involvement of other embryonic cells in her study. It was simply re-infusing Meagan’s cord blood cells back into her body. The hope was for the cells to go to areas of the brain that were under the most pressure and mitigate some of the permanent damage. By no means was this a cure for her Hydrocephalus, as much as it offered a hopeful “boost” for brain tissue – or perhaps other areas of Meagan’s body that were affected by the Hydro, such as muscular regions, vision, hearing, or any other area that may have been affected.
This whole experience with Meagan really made me think more about stem cell research as a whole. For so long, we have been pushed into the idea that the only hope rests in using embryonic stem cells for cures to cancers, other diseases, or to help children like Meagan with lifelong conditions have a better future. Why are we constantly led to believe there are no other options? Why should we feel caught between helping people and crossing ethical lines when we now have a beautiful medium between embryonic stem cells and adult stem cells – those cells found in cord blood. These stem cells are showing immense promise across the board in the treatment of several diseases or conditions, such as the recent stories of cured brain cancer in Spain, or new trials to see how cord blood cells can affect children with Autism right here in the United States. Many parents cannot afford to personally bank the blood, so most cord blood is simply thrown away. Some public donation banks do exist, but there needs to be more. I can only imagine all the stem cells we would have available for further research, all while respecting the sanctity of human life, if cord blood donation was the norm. There have been some pioneers in cord blood research, such as the Duke Children’s program where Meagan goes, or other places such as Mercy Medical in Maryland that just started the first public cord blood banking system for the state, thereby opening people’s eyes to the potential that lies in donated cord blood stem cells.
Meagan has now had three stem cell infusions at Duke. After her first infusion, I started to notice a very sudden change in her vision. I noticed her following me across the room, looking up at her mobile and trying to focus on the toys hanging above. I noticed for the first time, as I looked in her eyes, she was actually seeing me. For so long she had looked “through” me, but now she could actually could see her mommy.
Meagan’s second infusion was done around six months old, and again, I noticed a sudden change in Meagan. This time, it seemed to be cognitively. She was still floppy with no head control, but she started to smile on demand and communicate in her own ways with my husband and me. She began to react to her sisters’ silly antics and for the first time, seemed to “take in” the environment around her and became interested in her toys.
We just returned from Meagan’s third infusion earlier this month at almost thirteen months old. I have seen a rapid change in her use of her arms – she went from no weight bearing on her arms before the infusion, to suddenly having no issue doing so when I prop her up. She also is eating. This is a huge change. Meagan has had horrible eating issues since birth. She has been losing weight for months and has had zero progress with feeding therapy. After 6 months and two therapists, we still couldn’t get more than 4-5 ‘licks’ of food into her mouth. Post-infusion, she now opens her mouth when I offer baby food and swallows it. She has never done this before. As a matter of fact, her eating skills were reverting before this last infusion.
To say I am a believer is an understatement. I have seen the abrupt changes that have happened in the weeks after Meagan’s stem cell infusions. These little changes may mean something for Meagan’s future. I feel so extremely grateful she was able to be a part of the study. What makes me even more grateful is that we were able to participate in a program that used cord blood stem cells, while at the same time recognizing man’s God given skills to use those cells in life changing ways.
For me, though swirling with conflicted feelings at the time, I know I’d make the same decision again. Having been faced with the question myself of terminating my pregnancy with Meagan, I could have never destroyed another life to better hers. It would make me no different than the doctors who saw Meagan’s life as worthless.
We should celebrate the ingenuity of man’s research, but always remember that respect of human life is of utmost importance. Now with the promise of cord blood stem cells, we have an obligation to pursue this new ethical path of stem cell research. There is no reason we should have to destroy embryonic life when there are practical paths to the same end that uphold the responsibility we have to protect all life. In a document from the Pontifical Academy For Life regarding stem cell treatments, it reads,
“A good end does not make right an action which in itself is wrong.”
There has never been a truer statement, and I’m pretty sure Meagan would agree.
Molly is a cradle Catholic, wife, and mother of 6 girls. Besides staying at home to be wife and mom, Molly works in the music programs of local high schools, helps teach Irish dance at a local studio, and spends time tending to the special needs of one of their daughters, who was born with severe congenital Hydrocephalus. You can follow their journey at http://pricelesslittlepearl.blogspot.com. Molly has always loved writing, so the opportunity to contribute to this blog and combine that love with the passion she has for her Catholic faith has been a welcomed opportunity.