Editor’s Note: In an article for the Daily Mail, Gillian Relf described her experience of caring for her 47-year-old son, Stephen, who has Down's Syndrome. The experience has been so difficult that Relf said she wishes she had had an abortion rather than give birth to Stephen. (Gillian Relf, " 'I wish I'd aborted the son I've spent 47 years caring for': It's a shocking admission-but read on before you judge," Daily Mail, October 22, 2014.) Here, Penny Singleton offers her comments on the article.
At the young age of 20 I was married, and at 23 I gave birth to a healthy baby boy. My next pregnancy was difficult as there were anomalies that were seen during the first and second ultrasounds by 20 weeks. I was recommended by the high-risk OB/GYN to have an amniocentesis, which a few weeks later resulted in me having pre-ruptured membranes at 22 weeks. We discovered through the amniocentesis that the child would have Down syndrome. The OB/GYN on call at the time at the Baptist Medical Center in Jacksonville, Florida recommended that I terminate the pregnancy as soon as possible instead of suffering through labor and losing him at 22 weeks.
I felt awkward about having my unborn baby taken from me like he was a cancerous growth or some unwanted, unlovable thing. At the time, it did not seem the right decision to make because even though I was devastated, the day the results came back confirming that he had trisomy 21, I still—after reading literature about the disability and physical condition that often accompany it—desired to get to know this new human life inside of me. I wanted to see, touch, hold, love, and care for a warm baby that was both an expression of mine and my husband’s love for one another and of a belief that hoping for good in life is what makes life worth living.
What do you think I did? I made a decision to let Mother Nature take her course and I decided to go through the painful process of natural, non-induced labor and delivery without any pain medication. I wanted to be awake and ready to hold my 22-week-old baby in my arms as he died. I wanted to be completely cognizant of what was going on so I could be all that I could be in those short moments of his life with me. When I made this decision with my husband, I was in the earliest of mild labor pains. I knew we had a tough emotional next few days ahead of us. The most amazing thing happened though: my labor pains stopped, and because we had decided to let Mother Nature take her course, I was released from the hospital and remained on bed rest for an additional seven and a half weeks. During that time, I had intervals of small amounts of amniotic fluid seeping from my uterus but I remained healthy and the unborn baby grew.
Jeremiah was born on January 7, 1994 around 4:30 am. Within a few weeks, he had a cardiac surgery to correct a small hole in the interior of his heart and an abdominal surgery to correct a duodenal atresia. He never came off life support. He lived his two and a half months in the hospital. I pumped breast milk for his entire short life but he was not able to process it through his bowels because shortly after his abdominal surgery, he tested positive for Hirschsprung’s syndrome. He would need to undergo another surgery to install a colostomy bag which no surgeon would agree to perform on such an unstable infant who was needing 100% ventilator support.
Our only option was to wait to see if his lungs would grow healthy tissue, but without the nutrition of breast milk or even infant formula, there was no way short of a miracle that he could grow healthy lungs. We asked our family and church friends to pray and waited a few weeks to see if his lungs could rebound, but they didn’t. We tried an ounce of breast milk, and he loved eating it, to see if that could improve the growth of his lung tissue, but his abdomen swelled up horribly. We had a baby that could not process food to grow healthy lungs and could not have a surgery for a colostomy bag until his lungs were stronger. Without a colostomy bag, his abdomen would swell and his intestines would become sickened. What were we to do? I don’t believe in prolonging life for purely selfish reasons. No one would deny that me or my husband desperately loved Jeremiah and wanted him to be with us the rest of our lives. We made the difficult decision of lowering the airway pressure that was blowing into his lungs by 50% and lowering the amount of pure oxygen to a reasonable level just to see if possibly he could maintain lower rates on the ventilator. Maybe, just maybe, we hoped and prayed that he would be able to maintain life at lower airway pressures and lower oxygen purity and then if he showed strength and ability to breathe, then maybe he could undergo the needed surgery to install a colostomy bag. Jeremiah passed away around 10am on March 21 with us holding him and talking to him and loving on him. He died peacefully and very much loved. He had lived in neonatal for two and one-half months and passed away on his due date, March 21st.
One could argue that it was all a waste of time, effort, and money to go the route we did, but I would not change it for anything. I know that we gave Jeremiah all the help and support that he needed to make it in life, but it was just not meant to be. More than 20 years later, I am glad that we gave it all we had for our baby and that he gave it all he had, too; I think in the end, that’s what counts. We didn't throw in the towel and call it quits on a life that had significant issues just because it was difficult on us. I would much rather go through something like that than to experience the horrors of watching a child starve to death (as still happens in many countries today), watch a child mutilated or murdered before my eyes, or to have given up on ideals and beliefs that even in the midst of tragic circumstances, goodness and human achievement can be born in the hearts of those who suffer or see the suffering.
I am only human and of course I have thoughts of what if? What if we (I say we because it would have been a decision co-decided with my husband) had terminated Jeremiah? What would my life have been like? Would I have gone on to become a professional counselor for women forced to make choices about termination? Out of a sense of guilt and obligation to my fellow hurting moms, would I recommend making the choice to terminate if I had done so myself? Would I have gone on to become a successful neonatal nurse motivated by my inability to accept the reality of my choice? Would I have tried to make up for all that inward mess of second-guessing a choice of termination by being a proactive, professional nurse fighting daily to save the lives of the premature? No one will ever know because those are “what ifs” and I rarely speculate on “what ifs”. My reality is on the “what is”; our choices in life shape our “what is”.
I will share with you now about my “What is” is as I have so eloquently coined it. What is my life today over twenty years later? I had another son, Joshua, two years after Jeremiah passed away and another daughter one year after Josh was born. When I was pregnant with Joshua around 20 weeks along, I was told by the OB/GYN that they were beginning to notice through the ultrasounds that Joshua had shortened limbs and a small rib cage. They suspected a skeletal dysplasia class of dwarfism of some kind. I asked if dwarfism was related to trisomy 21 and physicians said, “No, not that is known.” When I researched about dwarfism, I realized that about 1 out of 40,000 persons are born with dwarfism. Not long before I found out that our son was going to be a dwarf, I had watched a documentary on PBS about Little People and I thought it was very interesting but I really did not grasp from the program how many physical difficulties that many dwarfs experience. It is not that they are just shorter, smaller people but there are a whole slew of physical issues that they must overcome or live with.
When I initially received the news, my husband and I rejected it. I thought, “There is no way that we are having another genetically altered child.” I mean that would put the odds for us having two children with different genetic problems at about 1 out of 120 million chances. It just does not happen and yet it happened to us. Joshua was not only born with dwarfism, he was 1 out of 1 million live births born with a very rare form of dwarfism called Kniest dysplasia syndrome. That pushes those odds even greater for those of you who are mathematicians, go have some fun with a calculator figuring the odds! It really boils down to this: “What is” was not supposed to happen… but it did. I point this all out to say that there are things and choices we make in life that we can control and there are things that are out of our control. This was one of those out-of-control things.
Again, I was given the choice to terminate and this time, I really broke down and cried and cried and cried. I will be honest, I felt suicidal at the choice being posed before me again. I did not then nor do I want now to suffer or have my children suffer… ever. The choice posed before me gave me the option of avoiding the heartache associated with caring for a child who may or may not ultimately make it with multiple health issues along the way versus caring for and loving a child who may never be able to run or play or do the things that other children are able to do. It is my choice to love, to believe that good comes out of and through dark situations, and that hope is born in a man or woman which keeps him or her going during the difficult trials of life. Joshua has been with us for almost 19 years now. He has had multiple surgeries and nearly died on more than one occasion. Joshua has the best attitude of any young man ever born on this earth. He is as humble as Moses, courageous as King David, and as solid as Joshua in the Old Testament. Well, he is Joshua; his name means salvation.
What can I say about Joshua to help a person understand? He cannot walk; he can barely get from his wheelchair to the toilet. He is sometimes very forgetful. He is often covered with eczema. It is hard to find clothes that fit him and he is as slow as molasses when getting dressed since he needs help buttoning and zipping and struggles when putting on his shoes. He has muscle fatigue and stiff joints. He has difficulty hearing, cannot fix his meals easily, and struggles to brush his teeth correctly. He cannot get into or out of a car by himself, and may not ever be able to drive. He has had so many hospitalizations and surgeries that I have lost count, and he has more doctors than I care to keep up with. He wears glasses that he doesn't want to wear. There are many things wrong with Joshua… but there are many things right with Joshua.
He’s a great person to talk to. He is by nature a fairly happy person even with all that is wrong with him. He has a good mind and is a senior in high school. He approaches life every day with a 15-20 minute struggle to get from his bed into his wheelchair. Some might ask me as a mom - why don’t I put him in his wheelchair for him; wouldn't it be easier? Every time that I watch him do this in the morning (and some mornings it is emotionally painful for me to watch, I admit), I think about what we all learned as kids about the butterfly struggling to escape the cocoon. That’s how I see Josh. As every day he struggles to make it out of bed, he still has the human hope and fighting will within him to take on a new day and whatever challenges it brings. I have learned from Josh that each day is worth struggling to live through. Each day is a chance to be part of the human experience, to be part of a family, to love and be loved, and to hope that good will one day replace suffering. Each day is not brighter than the day before but each day we can be stronger mentally and emotionally than we were the day before. Each day is a breath of air that we breathe, and whether it is a fresh breath or a foul breath is our choice.
I've made my choices and I can truly live with them. 75% of marriages end in divorce when the couple loses a child to death and 95% of couples divorce when there is a moderately to severely handicapped child. I am still having my life story written so I don’t know how it will end, but I can honestly say that for many years now, it has felt like our marriage has more stacked against it than for it and that we have only a shred of hope to make it any further. I think we have been running on that last tank of gas (or grace) for a long time. Who knows if or when it will run out? I only know what I can do today to make a difference in my husband’s life, my kid’s lives, and my community’s life. I only know that we have today to make it right. I don’t like to put off until tomorrow if there is anything good that I can say or do today to make a difference in the lives of those around me.
If you get a chance to look up Kniest dysplasia syndrome, please do so. It is a condition that can cause a person to deteriorate in the joints, eyes, and ears over a long period of time. When Joshua was around five, he was finally diagnosed. He has the potential to go blind or deaf or both with his condition. On top of all the tragic issues he experiences with his body, he could in the future be facing a situation as a wheelchair bound blind and/or deaf person. His condition could potentially be as a Helen Keller in a wheel chair. I have known this for over 10 years now, but when I found out, I wanted to die. I wanted to give up in so many ways. I did give up on my marriage for a season of my life, but my husband was gracious to ask for me back after all the heartache I put him through. I nearly suffered a nervous breakdown but never was hospitalized. I would look into the faces of my three precious children, grit my mental teeth, and push forward. Never look back is my motto. There’s not a whole lot I want to remember, to be honest. What’s done is my past reality. “What is” is my now. What is to be, I will deal with tomorrow. Who knows, my husband may tell me tomorrow he’s found another woman to live with and love and spend the rest of his life with. Or man…. Anything can happen tomorrow. Anything can happen today. I’m ok. I love all my kids and would sacrifice my life for them. I love my grandson just as much. I love my husband, too, and would sacrifice my life for him. He will tell you I have made plenty of mistakes. He would tell you I am not worth living with at times and he would be telling the truth. But that is what makes the human experience so great. We all struggle; we all fail; we all give up on each other sometimes; we all give up on hope at some time or other. Let’s face it, we’re not God. We are not perfect. None of us are. So my answer is: I choose LIFE - whatever it throws my way, I embrace.