Author's Note: This story makes use of actual interviews from parents regarding their experiences upon receiving a diagnosis of Down Syndrome. As you read, some of the things may be offensive to you, but there are some common themes in their testimonials that I feel a need to include in the story, even though they are dark. Just know that if you are hearing something which is offensive, a) It is based upon real life experiences and b) Under the advisement of a friend, I'm actually holding back. This chapter contains some of those themes and may be triggering to some. Reader discretion is advised.
"I'm sorry, but your child has Down Syndrome."
The words were uttered frankly, succinctly, and without emotion; and yet, when they exited the doctor's lips, it was as if every ounce of oxygen within Adrian Monk's body had been seized. After those words, for the next several minutes, he heard but a singular voice – the voice in his head.
Our baby has Down's Syndrome.
Our son has a genetic disorder.
Our little boy is sick.
The possibility of having a Down's child had been discussed earlier in their marriage when Natalie was pregnant with the twins and having a prenatal exam and the physician brought it up. At the time, Monk hadn't even considered it and had indicated he would be fine if that were the case. After all, not everyone had to be the same. But somehow, experiencing the reality of an actual diagnosis hit him in an unexpected way. Maybe it was the fact he was now sixty or maybe it was the fact that he had recently come so close to leaving the couple's two biological children without a father, but for some reason, just hearing those words set off a cognitive storm he had not anticipated.
Natalie's response was better. Already prepared through her studies regarding his heart ailment, she knew that Down's was a possibility. This knowledge didn't make her ache less for her child but it did give her a clear enough mind to listen to the doctor as she explained things.
"Down Syndrome has three varieties. The most common by far is Trisomy 21. This type occurs when, during the normal cell division that occurs prior to fertilization of an ovum. An error occurs where the cells of reproduction, the mother's egg or the father's sperm, retain an extra copy of Chromosome 21. Upon the fusion of the reproductive elements, that error is then propagated in every cell of the products of conception. This type accounts for 90-95% of the cases of Down Syndrome that we run into."
Natalie was confused. "Products of conception? Are we talking about the baby?"
"Yes. The fetus, placenta, amniotic fluid – anything that results from the fertilization of the mother's egg. If we tested your child's placenta or did amniocentesis to check the amniotic fluid, the same defect would be found."
"Okay." Natalie said, trying to comprehend. "But, you called what our son has something other than Triso…Trisonomy?..."
"Trisomy 21. And, you are correct. Your son does not have the most common form of Down Syndrome. Rather, he has Mosaic Down Syndrome which is considerably rarer. Mosaicism affects 1-2% of children with Down's. With Mosaicism the error occurs at some point after fertilization resulting in only some of the cells being affected. All other cells are normal."
"Does that mean he won't be affected as badly?"
"It's impossible to say. Even if we did more invasive tests and determine the exact ratio of affected to normal cells, we still don't know exactly which cells are affected and therefore do not know the impact. Looking at your latest sonogram, Dr. Rubin and I have noted that your son does not seem to have some of the outward features that we normally associate with Down Syndrome. For instance, nuchal translucency – the subcutaneous space at the back of his neck, is measuring within the normal range. His femur, likewise, measures within a normal range. These factors are probably why his condition was missed during earlier screenings. However, his nasal bridge is somewhat flatter than those of a normal child and, of course, the already identified atrial septal defect involving the ostium primum is also associated with a diagnosis of Down Syndrome."
"So, he may have some Down's attributes but not necessarily all?" Natalie asked.
"That is correct. Also, there may be other comorbidities that we aren't able to pick up since there is only so much testing that we can do while the fetus is in utero. For instance, hearing or vision problems are more common amongst Down's children. As I said, it is impossible to know some of these things before birth and even more so with Mosaicism because we do not know which cells are affected and which cells are normal."
"I see."
Dr. Rubin spoke up. "Natalie, I'm sure that hitting you with all of this is a bit of a shock and you do have our sympathy. If his heart defect persists, there are things that I can do to fix that – but I can't fix his chromosomes. We just don't have that capability – at least, not yet. Maybe, some day."
"Which is why we would like to advise you of what your options are with this pregnancy." Dr. Wood said, reaching into a file folder on Dr. Rubin's desk and pulling out a pamphlet to hand to Natalie. Natalie took the paper, but held it to the side while she reached into her purse for a notepad and pen to take notes on.
"The first thing you should know is the Massachusetts State Legislature just voted some new legislation into law."
"New legislation." Natalie wrote as the doctor continued.
"It's called the Roe Act. This law extends the time a woman has to terminate a pregnancy beyond the viable age of 24 weeks gestation up to term if needed- provided that the woman's physician believes that said termination will help 'preserve the patient's physical or mental health.' The pamphlet that I have handed you describes how the procedure is done. Given the stage of pregnancy that you are in, there are certain risks; but with the difficulties that having a child at your age, especially one with a disability, entail and given some of the recent stressors that I have read in your medical record involving your husband's health, I believe we could make an acceptable case under state guidelines."
Natalie tilted her head. "An acceptable case? A case for what?"
"Termination of the pregnancy." the doctor replied.
Natalie's eyes narrowed as she tried to comprehend what the doctor was telling her. "Wait, are you suggesting we abort him?"
Sylvia leaned towards her. "Mrs. Monk, I know that it is a difficult choice to make but, indeed, abortion is the usual way of dealing with this diagnosis these days. In America, 67% of Down's pregnancies end in abortion whereas in Europe the numbers are even higher. In Denmark the number is 98% and in Iceland, which has a much smaller population, the number is almost 100%. It's a choice that many women make."
"But this is our son you're talking about – our little boy."
Dr. Rubin spoke again. "Mrs. Monk, the burden that you may bear may be immense. There will be medical bills, time spent in therapy, and many other challenges as you accommodate your life to this child. He will always need special attention."
"Every child requires special attention." She said.
"Not like this, Mrs. Monk." Wood continued. "The reality of the situation is that he will never be normal. He will develop slower than normal. He will likely have learning disabilities, physical issues and he may never mature mentally beyond the age of a small child."
"Stop! I don't want to hear this. Adrian, make her stop!"
"Mrs. Monk." Wood said, reaching for her arm. Natalie pulled it away.
The alarm in Natalie's voice was enough to break Monk out of his daze.
"What? What's wrong?" he mumbled, staring at his wife.
"Didn't you hear her? This woman wants us to kill our son!"
Monk looked disturbed. "Kill him? Are you serious? That can't be right." He turned to face the doctor.
"Realistically speaking, Mr. and Mrs. Monk, what happens when you are too old to care for the child? Or after you're deceased? Who will care for him? I'm trying to inform you of how difficult your life may become. In the past, Mongol children were able to be committed to institutions, but…"
"Mongol children?" Natalie asked, getting increasingly upset.
"Our son is not Chinese." Adrian added.
"I'm not talking about Mongol as in Mongolian. I'm talking about a child who may have a certain level of mental retardation, one who has many problems."
"We all have problems. Some of us more than others." Monk replied, becoming angry.
"Listen, Mr. Monk…"
"No, you listen. You're upsetting my wife, so you need to stop. We came in here to hear about our son's heart ailment, not to be pushed into something that neither of us want. This just isn't right."
"If there is some religious objection, I'm sure that God would not be angry." She persisted. Monk exhaled, angrily but before he could say more, Natalie began to grab for her things.
"I can't believe this! So now you're God's agent?!"
Monk watched her carefully so that she didn't fall, but Natalie didn't care. "Oh, I suppose you and He have had a deep discussion to see exactly how He feels about it? Probably on a first name basis, huh?"
"Now, Mrs. Monk, there is no need to get so emotional. I'm just informing you that termination is an option."
"It's not an option for this family!" Natalie said angrily as she stood. "Our son is nearly seven months gestation. He smiles and sucks his thumb and moves and he opens his eyes and sometimes it even feels like he's doing somersaults in there. His little foot has rolled right across my belly and…" she began to cry. "He is our child and we love him Down's or no Down's. He's alive and he is going to remain alive. And you can just…just stick your pamphlet where… wherever! Adrian, let's go! We're through here."
Before he could react at all, Natalie was out the door so he ran after her, not bothering to say goodbye. By the time he entered the hallway, she was already thirty feet away, leaning against the wall, sobbing. Feeling helpless, Adrian walked up to her and tried to hold her, not knowing what to say but desiring to feel her closeness as much as he felt compelled to comfort her. She pushed him away.
"What were they saying?!" she said, gasping between sobs. "I don't want to kill him! Adrian, he's in here and he's alive and he's ours and I don't want them to take him away!"
Monk reached out and pulled her to himself and she sank into his arms. "Sweetheart, he's not going anywhere. I promise. Please, don't let what they said get to you. He's our little boy and we're going to take care of him and love him, no matter what."
What Monk couldn't say at the time was that it would all be okay, because truthfully, he didn't know. But what he said was enough.
After some time, they left the hospital and Monk drove them home. Truthfully, he probably shouldn't have been behind the wheel but he managed to get them to their house in Swampscott safely. As he pulled into the driveway, a text came in from Leland telling him that Strazek had agreed to meet and asking if he could join them at a restaurant in Boston at four. His reply was short and did not include an explanation but it gave Leland all he needed to know about how things went.
NOT TODAY. I'M SORRY.
Monk turned off his phone.
Natalie's mother dropped the twins off shortly after they got home and the Monks both did their best to pretend that things were normal. Neither of them was in a mood for a bunch of questions and Peggy Davenport left without so much as a hint that anything had happened, but Abby and Lee were not to be fooled. They didn't understand the situation but they both sensed their parents' moods and stayed close by all night, sitting in their laps and hugging them, telling them they loved them multiple times.
Finally, when it was time to go to sleep and the children were tucked into bed, the couple retreated to their room where Adrian held his wife as she cried herself to sleep. Monk closed his eyes and tried to let sleep take him away as well, but sleep would not come. The intense heartache he felt could not adequately be expressed. It wasn't just the hurt for his son but the guilt he felt inside, that he was somehow responsible for his condition. Monk's mind wandered throughout the night. He knew from past experiences that he couldn't just suppress his feelings indefinitely, nor could he let them all out right now. In either case, he would be an explosive mess. So, for now, he would try to manage them by himself and not add to Natalie's burden as they adjusted to reality.
The Agency was closed over the weekend which allowed the couple a little additional time to catch their breath. Adrian was mostly quiet, spending his time reading to the children or cleaning every crevice of their house while Natalie did research and read to him all she had found. It was mainly statistics but there was one website in particular that she had found useful. Created by parents who had experienced a dearth of information on this particular form of Down's, it provided information and answered questions and shared testimonies of parents just like the Monks.
Later that day, she spoke on the phone with Dr. Green, explaining their situation. True to her character, the doctor was very unhappy about how Natalie and Monk had been treated and took a personal interest in seeing that the Monks' needs were met. She emailed Natalie the name and phone number of a close friend of hers, aptly named Sharon Hope - a specialist who regularly worked with disabled children and had a Down Syndrome child herself. Ms. Hope ran a school for the disabled in Cohasset which was south of Boston and Natalie called her right away. Finding her compassionate, encouraging and up to speed on all of the advances that had been made regarding the disorder, she knew in her heart that setting up a consultation with the specialist was the next step they needed to take and Adrian let her lead the way. Just having this opportunity to feel supported by her doctor and knowing that there would be help for their son did much to bring peace to Natalie's heart and by Sunday night she was in a much calmer mood.
Crawling into bed next to Adrian, she spoke quietly of their near-term plans.
"Sharon told me that she can meet with us next Thursday if that's okay. She told me that the center is having a program that evening for the parents and thought maybe after we met with her, we could stick around and get introduced to some of the other families."
Monk caressed her arm. "If that's what you want to do."
She looked up at him. "Well, it's not all about me. What you want counts too. We're in this together, you know."
He nodded. "I know. But, I don't really know what I want right now other than for what is going to be best for you and our son." He swallowed. "I do think we should wait a while before we tell other people. There's just a lot to take in and I'd like to be, you know, on a stronger footing when we break the news."
Natalie wrapped her arm around his waist. "Okay. We can do that. We'll take time to get our bearings and get used to things and then decide when and where is the best time. Then we will tell them together."
"Yes, we'll tell them together."
Monday morning came and the Monks arrived back at the office ready to dive into work. While Randy showed Natalie and Heather Ophelia's latest school picture, Leland pulled Monk aside to find out how things were. Adrian was expecting this and headed off any questioning by telling him that they hadn't had the best weekend and that he'd appreciate it if they just didn't discuss it – for Natalie's sake.
"We'll talk when things settle down." He said.
Leland pursued things no further and instead called the team together to review the case.
"So, I've got new information on Simon Cass." He began.
"From your interview with Strazek?" Natalie asked.
"Yes, how did that go?" Monk asked, sitting up a little straighter so he could straighten the name placard on Leland's desk.
"It didn't."
Monk stopped what he was doing and looked up.
"Mike Strazek appears to have skipped town."
"Skipped town?" Randy asked.
"Yep, was supposed to meet me Friday. Didn't show, so I drove over to where the man lives and the place was empty."
"Well, that's just great." Monk huffed, sitting back in his seat. Natalie touched his arm and he took her hand.
"I'm not finished." He continued. The couple watched as he pulled out another set of papers then passed them to his three partners. It was the coroner's toxicology report. "Looks like you were right. Our departed Dr. Cass had elevated levels of potassium in his blood serum as well as traces of succinic acid and choline."
Natalie looked at Adrian. "What does that mean?"
"It means someone gave Cass a lethal injection. Any barbiturates?"
"None. Which means he died a quick but miserable death."
Monk shook his head.
"What do you think happened?" Natalie asked. Adrian looked at Leland and Leland nodded so Monk could explain.
"Well, in the penal system when a prisoner is given a lethal injection it is usually some sort of drug cocktail -a paralytic that will stop the prisoner from moving, a sedative that will put them to sleep and then something like Potassium Chloride that stops the heart. The elevated potassium in his blood could correlate with the use of the latter and the succinic acid and choline are one of the few possible indicators of the use of a drug called suxamethonium chloride or 'Sux' for short. It was once considered the world's most discreet murder weapon because it brings on a short-term paralysis in its victims where the muscles stop working. The victim is aware, but can't move. Without respiratory support, the victim is usually dead within a few minutes from suffocation. Without a barbiturate, like Sodium Pentathol, Cass was likely awake while he was dying but unable to move or breathe."
"Wow, that sucks." Randy replied.
Leland rolled his eyes. "Which means that Monk was right in that Cass was dead before he hit the water, at least 24 hours prior to when Strazak said he saw him, according to the coroner."
"Which means he didn't just fall into the river by accident." Natalie responded.
"Which means he was dumped there." Randy added.
"Exactly." Stottlemeyer affirmed.
"But, who has access to Potassium Chloride or this Sux that you mentioned?" she asked.
"I'd think anyone who is involved in prison executions or works with anesthesia." Randy replied. "Heck. Sharona could probably even get…some." He shifted uncomfortably in his seat as he considered that possibility. "Reminds me, she called on my way to work. I'd better call her back." He said, taking his cell phone out of his pocket and exiting the room.
"Well, the death penalty hasn't been carried out in Massachusetts since the late 1940s." Monk replied. "And even then, it was by electrocution, not lethal injection."
"So, that leaves a hospital." Natalie said.
"Which also fits with Cass's former profession being a doctor." Leland said.
"Where did Cass have his practice?" Monk asked. "Maybe we can start looking there."
"I have no idea." Leland replied.
"No answer. It was at LaGrange Street, across from Isadora's." Randy said, returning to the room. "
Natalie raised an eyebrow. "The strip club?"
Randy stammered. "Um…well, yeah." He motioned with his hands. "Kinda goes hand in hand with the plastic surgery…not that I ever…um…actually… You know what, I think I'll try to call her again."
"You do that, Randy." Natalie said, with a smirk.
"Well, the main hospital near there is General." Leland said.
Monk shook his head. "I'm growing to detest that place."
"I hear you," Stottlemeyer said. "But, currently, it's what we have to go on. Go get your coats and meet me outside. I've got to go pull Randy out of the dog house. We'll go from there."
