My name is Claudia Crown Ades. I live in Santa Monica, California. I have been married to Richard Ades for five joyous years.
Three years ago, when I was 26 weeks into what seemed a perfect pregnancy, I made the decision along with my doctor not to have an amniocentesis. At 33, there seemed no need. Then one day, feeling anxious and worried about declining that test, I went to my doctor. There was no basis for my anxiety; it was just an instinct. However, to set my mind at ease, I was sent to a radiologist, an ultrasound expert. "Don't worry," my doctor told me, "he can see a vein out of place." I was never expecting what came next.
The radiologist spent far too long conducting what was supposed to be a routine examination of a healthy baby. He told us that he wanted to review the images and that he would call us. The next day, when we returned from Rosh Hashana services, there was a message on the answering machine. "I'd like you to come back in so that my partner can take a look at your ultrasound. Please don't worry. I don't think it's anything," he said. You can't tell a pregnant woman not to worry.
His partner, who wrote the authoritative book on ultrasound, immediately determined that there was a sac of fluid in my baby's brain. He called it a Dandy Walker Syndrome. He also told us that many people walk around with Dandy Walker Syndrome without any impairment. On the other hand, it could be more serious and he referred us to a perinatologist for more expert opinion. The doctor put his hand on Richard's shoulder and told him not to lose hope and that everything would be ok. You don't console someone if nothing is wrong.
Because of his suspicions, which we were unaware of at the time, the perinatologist rearranged her schedule to see me the next day resulting in a agonizing night of emotional torture.
The next day, we went into the perinatologist's office, apprehensive about what we might discover. She prepped me for an ultrasound. Within thirty seconds, the perinatologist said "I concur with your doctor." Concur with what? At this point we had no idea.
This was when our worst fears were realized. At that moment we learned that our son's Dandy Walker Syndrome was more serious than we had known. In addition to a fluid filled nonfunctional brain, he had a malformed heart with a large hole between the chambers that was preventing normal blood flow. He had also developed an extremely large cyst filled with intestinal matter, and hyperteloric eyes which was another indication of severe brain damage. We later found out that these symptoms added up to Trisomy 13, a fatal chromosomal disorder.
I with each new bit of information, the tears flowed harder. Richard was holding me. I thought we were the only parents in the world who had ever heard such devastating news about their child. What were we going to do? We loved this baby. We wanted this baby desperately. This was our son. We were preparing our family and our world for him. And now, we had to prepare for a tragedy. Away went the baby name books. Away went the shower invitations. Away went the first birthday party, the baseball games, the bar mitzvah. Away went our dream.
Along with the tears, the questions flowed. Could a cardiologist fix our son's heart? Could a neurosurgeon repair his brain? Could an eye surgeon help him to see? Could this baby survive? Was there anything at all, that could be done? The answers were emphatically no. It was our worst nightmare and it was real. Even if my son survived the pregnancy, he had no chance of life. Every day meant pain and torture for him. As his mother, I could not, in good conscience, allow my child to suffer.
By this time, a geneticist had joined us to. discuss our options. We went through them all. I could carry to term. I could have a cesarean. I could induce pre-mature labor in the maternity ward. All of these posed high risks for me, and more pain and suffering for my son. The doctors felt that a procedure called and Intact Dilation and Extraction (Intact D&E) would be the safest for me, my baby, and for my future children. This is when we learned about Dr. McMahon and his clinic.
When I first met Dr. McMahon, I asked him only one question: "Would my baby be in any pain?" This kind and gentle man assured me he wouldn't. He specialized in severe anomaly cases like ours: families in crisis and tragedy. He explained the procedure step by step to me and my husband. He set our minds at ease. We knew my baby and I were in good hands.
The procedure was difficult and it was painful. Dr McMahon put me under anesthesia and inserted laminaria to slowly dilate my cervix. He and his staff were compassionate and patient as they painstakingly determined how wide my cervix had to be to safely and gently remove my baby and prevent my uterus from tearing. Living ten minutes away, Richard and I were lucky enough to go home between each treatment. This is luxury other families did not have. Many of Dr. McMahon's patients came from out of state, some from other countries. Being able to go to my own comforting home was a luxury I relished.
The entire process took three days. There were no scissors stabbed in the back of his head, no brains sucked out, no skull crushed, and no pain to my baby.
Ironically, the final day of the procedure was Yom Kippur, the holiest day of the Jewish year. On Yom Kippur, we are asked to mourn who have passed and pray to God to inscribe us in the Book of Life. I prayed more than one person can pray. I was praying for all of us.
Although I never imagined I would be faced with such a decision, I can honestly say that for many reasons I feel very blessed. First, that I was able to find out when I did. Second, that I had access to the finest medical care in the world. And third, that I live in a place where my rights as an individual have not been compromised.
Though I hope and pray that no one has to go through what my husband and I have, there are people who will. Many families who are opposed to abortion have chosen this procedure and have come to realize its necessity. The point is, it can happen to anyone -- to you, your wife, your sister, your daughter, your friends. All women should have the protection, the guidance and the access that modem medicine allows. This procedure is designed to protect the integrity of the family.
Thank you.
Implying that a cesarean is high (deathly) risk is not true. I had two and lived. Yes it’s more risky than natural child birth. Every birth is risky.
I’ve thought of this many times, but sometimes I don’t like pre-natal technology. It serves an excellent purpose and serves us well, MOST of the time. I loved having my sonograms and would have been devastated if I had found out something was wrong with my little one. But what about the time before all this technology when life was simpler (and harder). Women didn’t know if their baby was healthy or not until it was born, thus no opportunity to kill it. No I’m not backward, and I think prenatal care is such a blessing….my point is, let God take the child. Let God be the ultimate judge of life and death. We can’t justify it, because the baby is sick. To me personally, abortion boils down to ONE THING……..a complete and utter lack of faith in God to take care of the situation in HIS TIME.
And the very saddest part about stories like this is, couples miss out on so many blessings a sick child can give. God, in his infinite wisdom had a plan for this baby. We are all going to die. Sick babies just die faster. Why take it? We don’t understand God or his plans. We only have a basic, limited understanding of the Supreme Being. His Glory is so magnificent, we don’t even have a clue until we meet him someday. It’s best not to interfere with his plans, IMHO.
Another thing that is sad, although I do not question the severity of this case, is many times I think the unborn babies poor health can be over exaggerated. I have a friend down the street who home school’s a very beautiful 11 year old girl with fluid on the brain. And I went to church with a women who was so incredibly sick during her pregnancy that the doctors begged her to abort. Her boy is 20 something now.
I do have to honestly admit something here before I go. I really struggle with the abortion issue in the case of the health of the mother. Especially if she has other children at home. And yet, I know a necessary abortion for the health of the mother is very rare, if honestly needed at all. I do struggle with it though.