Month: July 2018

One of my very favorite things to do as a nurse is to educate. I feel so fulfilled when patients and their families feel empowered after I’ve been able to sit down and share some of my knowledge with them. Even as a new nurse, I recognized the importance of hospice and palliative care. It doesn’t take long in the medical profession to realize that we cannot “fix” everyone. And furthermore, even if we could, it really shouldn’t be our goal 100% of the time. Some of my most memorable experiences as a nurse have been regarding end of life decisions and care. I really feel that I will end up as a hospice nurse someday when I’m burned out on the exciting fast-paced nature of acute care.

The very first thing I remember learning in nursing school was that never, ever, under any circumstance should you attempt to comfort a patient or family with the phrase “It’s going to be okay“. Because, you would be lying to them. Even the healthiest of patients can take a turn for the worse after an event or surgery. Even when doctors, nurses, therapists, do all the right things, people die. And so often, in their journey to the end of life, they suffer.

I have found that the concept of hospice and palliative care is misunderstood but a large majority of people. There are so many misconceptions about what hospice and palliative care is, what their goal is, and how their loved one will be cared for under it.

“They’re just going to give my mom enough pain medication to kill her”

“Once he’s on hospice, he won’t be able to do the things he wants to do”

“Accepting hospice is giving up”

“I can’t stay at home if I am on hospice”

“If my dad is on hospice, he can’t see his doctor, take any medications, or receive any medical treatment anymore”

None of the above things are true, by the way. Don’t feel bad if you thought they were, because you’re in good company. Hospice is a benefit that everyone is entitled to. It does not cost your family money and you will never receive a bill for it. The individual must qualify with a diagnosis where they’re not expected to live past 6 months. The ultimate goal of hospice is to support patients and their families at the end of life, in whatever capacity they need it. If they are in immense pain, hospice services provide medication to help alleviate it. If the patient and/or family want counseling and grief services, hospice provides that (and not only during the dying process, but for months and years after). If the family needs education on what to expect at the end of life, whether it’s the physical manifestations of actively dying, or the process of making arrangements after the loved one has passed, hospice provides that too. It is a wonderful and amazing service that few too many people take advantage of. It is completely patient and family driven and the professionals in the organization are there as little or as much as you need them to be. They are highly trained people who are doing this because they’re passionate about it. You don’t wake up one day and decide to be a hospice nurse. It is not for everyone. It is truly a calling.

So as you can imagine, the idea of perinatal hospice and palliative care is not quite “mainstream”. But why? For one, babies aren’t “supposed” to die. Parents should never bury their kids. We’ve all heard that phrase and of course, in a perfect world it’s absolutely true. From the very first moment I became a mom, I assumed that all of my kids would outlive me. Because that is what is supposed to happen. And with the amazing advancements in medicine and technology, that idea is shared by neonatologists and other physician specialists everywhere. They do some unbelievable things in NICUs these days. They can keep a 24weeker alive now. They transplant organs into newborns. The therapies and treatment modalities for these kiddos are incredible, and some people think that advocating for hospice and palliative care is giving up the opportunity to potentially “fix” these babies. Choosing this route for your baby is giving up on him. Because, miracles happen and you never know.

But what happens when you do know? When second and third opinions have all confirmed the same thing: your baby’s heart is sick, and it’s getting tired. Even surgery isn’t an option. If he makes it to term, machines will have to keep him alive until he receives a heart transplant. We do not know the long term effects all of this will have on his body. On his brain. On his life. We do not know if all of this medical intervention will even keep him alive anyways. So what happens when you do know?

You choose the palliative option for your baby because the thought of your child suffering a painful death hooked up to machines and lying in ICU incubator is worse than anything you could ever imagine. Watching a code team attempt to resuscitate your baby would surely give you nightmares for the rest of your life. I have been in codes where the team knows the efforts are futile. Some are called quickly, and some are dragged out because the sobbing wife, mother, husband, father is standing right there. You need them to see that you did everything you possibly could to save their loved one. And there I would be, watching them, everyone in the room knowing that you can’t resuscitate a heart that doesn’t have the ability to pump. I would likely scream at them to please stop, and would be wondering why I even let them start CPR in the first place. So, here I am. Here we are, my husband and I, having made the most devastating and difficult decision we’ve ever been faced with. All in the name of love. We love baby boy so much that we can’t see the merit of putting him through all that medicine has to offer without any hope that he will be able to live a normal life. Of course, this decision is fluid, and if by some miracle he is born and his left ventricle somehow functions as it should and he proves everyone wrong, all of this changes, and we fight. But you’d better start lining up for autographs because baby boy will have books and movies made about him and his ability to defy literally the worst of the worst case medical scenario known to doctors everywhere.

I think that palliative and perinatal hospice is going to continue to gain momentum in an age where more and more conditions are being diagnosed prenatally. I feel “lucky” in the sense that I have had several weeks to let this news about baby boy sink in and have been able to mentally prepare for it. Surely if we didn’t know about his condition prior to his birth, the scenario where he’s being resuscitated in an ICU on machines would have been our fate. We would have had to make split second decisions that we likely would have questioned for the rest of our lives. I am so grateful for the amazing team of professionals who have cared for us through this journey. The high risk OB at MFM got me a copy of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief

Her nurse calls to check up on me, to ask if I need anything or if I have any questions. The cardiologist cried with me when she was faced with giving us the devastating diagnosis. Everyone has hugged me, and I mean really pulled me in to comfort me. I think it’s easy to see people in the medical field as hardened, jaded people, especially for those whose job is to give terrible news every.single.day they go to work. But they are all people, who are in this line of work because they’re the best kind of human: the one who can empathize and comfort another human when they are at their most vulnerable. After having just been given the worst news of their life, they have that ability to pull you in, lift you up and be the exact support you need in that moment. Even if 10 minutes prior, they were a total stranger to you. They know that medicine is not infallible. And even if their course of action your situation would be different, they facilitate whatever it is you need and support you in it. I’m grateful I’m already a nurse because this experience would surely make me question why I wasn’t. If I’m ever able to provide to one person what my amazing team has provided for me, I will consider my career a success.

Maybe someday I will be strong enough to become a stronger advocate for perinatal hospice and palliative care than just writing a blog post about. I’m not sure if my experience will be beneficial or detrimental to helping others navigate this process (you know, it’s taboo to cry harder than the family, which is the main reason I don’t do pediatrics, NICU, or have pursued hospice yet). I also understand that this route is not for everybody, and respect those who choose aggressive treatment for their loved ones. It’s a very personal decision and not one that can be made lightly or in haste. If there is anyone reading this who would like to reach out to me, I’m more than happy to connect. We’re all in this together.

 

The day we found out there was something wrong with our baby’s heart, we opted for an amniocentesis, which looks at baby’s chromosomes to see if there exists a genetic mutation that caused the defect. When I sat in the room a year and a half ago and received the news that Lauren had a heart defect and a brain defect, I opted for an amniocentesis at that time as well. Her results came back and gave us some answers about why she was born without the nerve connection between the left and right side of her brain (corpus callosum). She has a duplication on the 6th chromosome- 6q25.3- and the change partially duplicated the ARID1B gene which is implicated in neurodevelopment. Because of Barry and I lack of mutation at that chromosome site, geneticists are confident it was this super tiny change that caused her brain not to develop properly.

We were told that aortic stenosis in a fetus is generally something that happens sporadically. I’ve read that 6 in 1000 babies are diagnosed with critical aortic stenosis, with a majority of the cases affecting boys. The cardiologist told us that some research has isolated just a two or three genes associated with the development of this condition, and in a normal amniocentesis with microarray, they wouldn’t be picked up. Sometimes infections in a mother can contribute to aortic stenosis, including contracting rubella while pregnant. Of course, I didn’t have rubella, I’ve been vaccinated and I have tested immune with blood titers since. I do not smoke, drink, use drugs. I don’t take medications contraindicated in pregnancy. And baby does not have anything wrong with any of his chromosomes. So. Idiopathic. Meaning, random, not linked to anything in particular. Shit luck.

I wasn’t expecting for the amnio to give us any answers. And I know we will never have answers as to why this happened to our little boy. And so, we wait. For whatever is going to happen between today and the end of November.

You may be wondering how I’m coping having been giving the news just five short weeks ago that our third baby due in November isn’t going to survive. That’s not all that I have going on in my life: my husband is traveling for the next 6 weeks for his job (like, he’s gone and virtually unreachable except by spotty e-mail), I have two young kids (4 years and 1 year), one of which has some special medical needs. I also have a dog, which I only mention because she’s more work than both of my kids combined. Oh, and I work full time, 12-13 hour shifts, 1500 miles away from any family support. I’ve had people at work ask me how I’m even getting out of bed in the morning, never mind how I’m coming to work to take care of perfect strangers. How can I remain so calm when I tell them about my situation? How can I smile and tell patients and family members that the baby is due in November and that I’m “excited to have him here” ? I have a few things I’ve found that are helping me deal.

I cry. A lot. Like, ugly cry, I would say at least 4 nights a week before I go to sleep. No shame. Sometimes it’s when I think about giving birth to him and having to hand him for the last time over to the nurse, knowing I’ll never hold him again. Sometimes it’s when I think about the fact that I’ll never get to watch him walk and talk and learn like I have with my other two kids. Other times it’s when I think about the prospect of him being in pain or suffering. And sometimes it’s because I can’t stop saying “it isn’t fair” over and over and over again.

I also read books, blogs, websites, memoirs, anything I can get my hands on where I feel like I can connect with someone who has dealt with this. This is by far the hardest and worst thing I’ve been through in my life. But sometimes you have people around you where the worst thing in their life is that they didn’t get much sleep the night before and they’re tired. I have to be able to talk to people who get it. Who can actually help me with this entire process. I am so grateful that not many people in my life know the process of filing a life insurance claim on their baby. Or the legal requirements for a burial or cremation for a baby at a certain gestational age. Unfortunately, there are people out there who do and those are my people right now. And I feel like asking one of my friends to come look at baby urns with me would be a bit of a buzzkill.

And maybe the most influential coping mechanism I’ve found is, as the title suggests, choosing joy. It’s so cliche, but I love it, because it’s true. Everyone has something shitty going on in their lives. If you encounter someone who doesn’t, they’re lying. Every single day when you wake up and you’re alive, it’s an amazing thing. And if you can get out of bed and choose joy, it’s an even more amazing thing. As someone who has struggled with post part depression, I don’t want to disparage those who have imbalances and who can’t just “choose joy” and move on. For some it isn’t that simple. But for the rest of us, I do think that choosing joy is something that is a conscious choice. I could very easily get out of bed and be in a terrible mood all day. I could groan and roll my eyes at everyone that said hello to me. I could say “terrible” every time someone asked how I was doing. Misery loves company, right? But being miserable isn’t going to change my situation. Projecting my sadness, anger, anxiety, and uncertainty on others isn’t going to heal my baby. And it’s not going to make me feel better, either. Now, am I happy every minute of the day? Is every day full of joy? No and definitely no. I can be a little edgy. I can get a little sensitive and take things personally. Sometimes I yell at my dog. Sometimes I need to walk away and take a mental time out. But at the end of the day, despite the fact that I wake up every morning wondering if today is going to be the day I stop feeling my baby boy kicking me, I have so much in my life to be happy about and thankful for. In the midst of mentally preparing myself for a baby that is going to die, I have two kids who are very much alive (one of whom wants snacks every four minutes). I have a husband I am so deeply in love with after over a decade of cross country moves, separations due to work, special needs children, missed births, and now the worst nightmare a parent can face. I have an amazing comfortable home in a safe area with good schools. I have enough money to pay my bills and provide for my family. I have great health insurance and all the resources I need to ensure my kids thrive. We have an absolutely amazing village of people who would (and have) dropped everything to help us out. I choose joy because the great things in my life consistently tip the scale. I choose joy because choosing misery seems like an awful lot of work. And finally, I choose joy because someday, my kiddos are going to be old enough to understand what we went through when they were young and I hope that I’ve set an example and given them the tools to choose joy when life isn’t fair to them.

 

I will start by saying that we have been absolutely overwhelmed but the outpouring of love, thoughts, and kind words since we began to share our story. Everyone has been more than helpful and it means so much to us that baby boy is so loved and in the hearts of so many of our friends and family. That being said, there are some cliche things that people have a tendency to say to people who are struggling with a loss like ours. Honestly, I think it’s because most people just don’t know what to say, and instead of saying nothing, they say one of these things in an attempt to provide something in the way of support or encouragement. I have always been a pretty open person and don’t mind sharing this intimate and difficult part of our lives (obviously, I started a blog). I don’t mind when people ask questions because they are genuinely curious, and to me it shows that they care. It’s so much more awkward for other people, I think, because they may not know in that moment, on the spot, how to respond in the best and most supportive way. Everyone undergoing a journey like ours needs a different kind of support. Some need and want prayers. Some want resources. Some want to be left alone. Some want to talk about it. And some just want you to give them a hug and say “I’m so sorry. Please let me know how I can help”. I can tell you, though, unequivocally, most if not all people do NOT need or want the following:

1. God only gives you as much as you can handle. Oh, okay, cool. Here I was thinking I didn’t have a choice in handling the shitstorm I was given. Now that I know God only tests us within a smidge of whateverthehell our personal threshold is, I feel much better. Thank you.
2. I could never do it, I don’t know how you do. Well, what would you do? Not trying to be snarky, but if you could never do it, what would your alternative be? Run away? Change your name? Fake your own death? The fact is, you could do it and you would do it, because like me, you would have no choice. There are a lot of things I could never do. These include things like run a 5 minute mile, wrestle an alligator and give up chocolate for the rest of my life. These things do not include taking care of my children and family to the best of my ability and working through a difficult and tragic situation my family is faced with.
3. God only tests his strongest warriors. I must be the strongest MFer on the planet if this is true. Besides the fact that I refuse to believe in a higher power that is seemingly in control of causing so much pain and suffering, I cannot wrap my head around having to endure the absolute most heartbreaking scenario any human can face, just because I’m “strong”. I’m not denying that I’m strong, I’m denying that I’ve been put in this situation because of it. 
4. At least you have other children. I guess that makes this one expendable?
5. It wasn’t meant to be. But my baby dying was? Cool. Thanks. 
6. God needed another angel. This God person is really fucking selfish. No one needs my baby more than I do. Of that, I am absolutely certain. 
7. I know how you feel. Unless you actually do, don’t say this. This journey is not unique to me. I understand that, and am absolutely open to those who have been through it to reach out, if they’re comfortable. Some have and their ability to share in my grief after experiencing it themselves is so powerful and means so much to me.
8. My friend/aunt/sister/cousin/acquaintances baby had this, and she is 7 and doing great! Don’t give up! It is very likely that you have absolutely no idea what the hell you’re talking about. If that person’s baby had exactly what mine does, the chances of him or her “doing great” are slim to none. We’ve been given the poor prognosis, his heart has begun to fail, and sharing your friends situation where her child is thriving is not helpful. I’m overjoyed that he or she is doing well despite some sort of CHD diagnosis, but very surely it was not the same one. 
9. It’s all in Gods plan. God needs an intervention and some life coaching, then. 
10. Everything happens for a reason. This is possibly the worst one of all. I don’t care who you’re saying this to and in what circumstance, but it’s never ever helpful. Is the reason it’s happening to me because I’m a shitty person? Is it the work of karma? God smiting me? This bullshit phrase insinuates that there is a reason and that the individual is deserving of their unfortunate circumstance. I didn’t rob a bank and get sentenced to prison. Going to prison, in that situation, would have happened for a reason. Losing a baby? Having a sick child? Having to make the choices we’ve had to make? I cannot think of a single reason we’re deserving of this fate. Don’t, under any circumstance, tell me there is a reason it’s happening to me. 

Know your audience and choose your words carefully when you’re dealing with someone experiencing any kind of grief. I have a pretty thick skin, personally, and have most certainly been told some of these things. I can nod, smile and walk away. Sometimes, though, it’s important to maintain some distance from people who actually do believe having a sick baby is “part of Gods plan”. I can’t nod and smile in an attempt to keep the peace with someone who’s views very obviously stray so far from my own. Everyone is entitled to their own opinions and beliefs and I’m not an overly sensitive person by any stretch of the imagination. If you don’t know what to say, “I’m sorry” or “I love you” are usually always safe bets.

My husband and I have always considered communication to be the strongest asset in our marriage. Like anyone, we disagree and have spats, but without fail we consistently are able to meet back in the middle and work things out. I don’t think that either of us ever anticipated that we’d have to endure conversations regarding the end of life for one of our children. But here we are. We’ve spent countless hours just talking about all of the options. I feel so lucky that we share so many of the same fundamental beliefs and views, especially in a time like this. It’s part of why our marriage is so strong and why we make such a great team.

So our options, after the first echocardiogram, were: termination of pregnancy, surgery, possible heart transplant, or palliative/hospice. Yesterday, I had a second echocardiogram. Not much had changed, except that the aortic valve was now leaking, an indication that baby’s heart is getting tired. Now, the options are: heart transplant, or palliative/hospice. Of course, there is a very strong possibility that baby boy won’t survive until term. As he grows, and the demand on his heart grows, he is at risk for sudden cardiac death. His right ventricle is supplying all of the cardiac output, and with the aortic valve now leaking, it’s difficult to say how much longer the right side of his heart will be able to sustain 100% of the function. The efficiency of his heart should be about 29%, and he is functioning at 20%, which the cardiologist says isn’t terrible per say, but it’s also not great news either. Our only option, she says, is listing baby immediately upon birth for heart transplant.

So option 1: Baby is born. He is immediately brought to CVICU where he is put on medication called prostaglandin to keep the ductus arteriosis open. He would be listed for a heart transplant immediately. He may require something called ECMO (extracorporeal membrane oxygenation) similar to heart-lung bypass machine until a heart became available. Which could be months. Maybe longer. A few things we had to consider regarding this option, though. 1. If he was born with a completely not working left ventricle, how long would his body (namely: brain) go without oxygen? What are the longterm effects of this (rhetorical question). Would he even survive long enough to initiate ECMO and prostaglandin? Would he live long enough to receive a heart? Remember, another baby who is a perfect match needs to die in order for him to receive a heart. Hundreds die waiting. A handful of infants a year receive one. If he did receive a heart transplant, and survived, would his body reject the new heart? It’s not uncommon for these kiddos to be on 10-12 different medications not only to keep the body from rejecting it, but to ensure the heart is functioning appropriately. What precautions would we have to take, since he would be immunosuppressed from the transplant medications? How would we care for our other two children and be the best parents we can be to them, while simultaneously trying to juggle what is best for our incredibly medically fragile child. Would our son even be able to go to school, kids are like tiny germ incubators. A cold could kill our baby. What would his quality of life be? Would there be longterm effects from his time waiting for the transplant? Would he be able to do all the things “normal” kids do? And the most important question of all: Do we want to put our baby through all of that? If he dies attached to machines, intubated, somewhere that isn’t in our arms, would we wish we had made a different choice?

Option 2: Baby is born. He is immediately brought to my chest, we forego medical interventions and we enjoy every last second with him in our arms. We know that he is not going to survive, we make the conscious decision to go against all parental instincts, and we love on him for however long he has. It could be a minute, an hour, a week. How could we possibly look at our beautiful baby and deliberately forego any intervention? Would we feel like we were giving up on him? At least if we tried and it didn’t work, we could say we tried, right? What if the doctors were wrong, what if we’ve made this choice and he’s born and does better than expected? Will it be too late at that point to try and intervene? Or, will we be at peace with the decision to put quality of life above quantity of life. Will choosing a palliative route be more humane and more ethical than “doing everything”? Would we be relieved to know that our sweet boy leaves this Earth having never experienced pain, and suffering, but only love? Or, would we wish we had made a different choice?

There is no right or wrong answer. Every single person reading this blog would have a different idea about what was best for them, and for their family. Everyone would be able to justify their decision (not that it would need to be justified by anyone) taking into consideration different criteria. We all have different life experiences, faiths, opinions, emotions and goals. We find ourselves between a rock and a hard place. Will we cause pain and suffering for our baby, or will we give up on him. At least, that’s how it can be looked at. But, it could also be looked at in a different way. Will we take advantage of the science of medicine knowing it may or may not work, or will we love our baby to death? The selfish and anxiety ridden side of me hopes that he passes peacefully in my womb, where the monumental task of choosing his fate no longer rests on my shoulders. A smaller part of me hopes I get to meet him alive, even if it’s for just one minute. If there is one thing I’ve learned through all of this, though, it’s that I’m not really in control of any of it. I’m a total control freak and planner (just ask my husband), and maybe that’s why I’ve been able to maintain my composure so well through all of this, because really I have completely given up on trying to have an semblance of control. I can’t change any of this, even though every fiber of my being wishes that I could.

I have the added experience of being a nurse, and seeing families make decisions on behalf of patients on both sides of this spectrum. I see the 98 year old woman who’s age is higher than her weight, who’s body is tired and who is ready to go. I see her children who aren’t ready to let her go. I see them consenting to all treatments, to chest compressions that will most certainly break every last one of her ribs, to a feeding tube to sustain her body even though her mind is gone, to every last medication with side effects that will require other medications to reverse. I see the empty shell of a human who is forced to undergo medical treatment that everyone in the care team knows is futile. I also see the husband who’s wife is sick, who has been told that an experimental treatment might buy a little more time. But it also might not. That continued treatment would make her sicker, weaker, more tired. It would keep her away from home, and her family, and from having her last days spent surrounded by those she loves. And knowing that no treatment meant less time, I’ve seen people make the decision to withdraw care, go home, opt to be comfortable. To vow never to see a doctor again, or have an IV stick, be given painful medication, or eat nasty hospital food again. It’s a beautiful thing when we are able to make those decisions for ourself, regarding our own lives. But so often, it falls onto family members who may or may not know their loved ones wishes. Or in our case, we are making decisions on behalf of our child, who cannot make that decision for himself.

 

“And in the end, it’s not the years in your life that count. It’s the life in your years” – Abraham Lincoln 

I remember the feeling of scrolling through Facebook immediately after getting the news about Lauren. This time it was even worse. How could the world possibly continue to go on when I feel like my world is ending? Suddenly, everything else you thought was important no longer holds any value. The stress of work, money, difficult relationships, family feuds, overbearing HOA’s, all of it, completely irrelevant. I remember wanting to delete Facebook immediately in a knee jerk reaction because not even one ounce of my being could care any less about what the fuck Donald Trump was doing to piss people off today. I didn’t want to read about the superiority complexes of so many keyboard warriors in “mom groups”. I don’t care about your workout, your diet, your vacation, or how your meal delivery service dinner turned out. I just found out my baby is sick, and you want me to care about your life?

I have really tried to perfect my ability to just scroll past this stuff. Sometimes I hide posts that hit a nerve. I try not to engage, even though online it’s so very easy to sit here on my couch and pick a fight. Sometimes it’s easy, in person, too. Sometimes someone strikes a nerve with you and you can’t help but say something equally insensitive. But most times, you have to bite your lip, smile, nod and walk away.

I had a patient just a few days after finding out about baby boy. She was an older woman who was very obviously unhappy. This particular day, she was stressed out not because she was in the hospital, but because her cat was home alone. Her teenage grandson had said he’d go over and feed and check on the cat around 11:00am. At 12:30, I happened to be in her room talking to her and giving her some medications. She was so upset that she hadn’t heard from her grandson yet, and “he’s probably useless just like his father”. She continued to vent, which of course I allowed her to. It’s part of my job, and one that I usually don’t mind. She kept going on and on about how terrible her life was. She repeated on three different occasions, “you have no idea how horrible I have it”, “my life would make anyone else’s look like a walk in the park”, ‘you’ll never know what it’s like to have a crappy life like me”. I hope my facial expression didn’t give away to her how I was feeling. At that moment, I wanted nothing more than to tell her, “I’m carrying a baby I just found out is going to die, but you keep telling me about how your grandson is a piece of shit because he hasn’t given you a status update on your god damned cat”. But alas, I didn’t. I nodded, attempted to empathize (very poorly I assume), and eventually got to the point where I had to make an excuse to leave her room. It reminds me of one of my favorite quotes, “Be kind, for everyone you meet is fighting a battle you know nothing about”. I don’t take my personal life to work, or at least I try very hard not to. My patients are still having a crappier day than I am, because they’re the ones in the hospital, and I’m the one working to take care of them. But regardless of that, it’s still a struggle to carry other people and lift them up, when you feel like you can’t even take care of yourself.

So don’t feel guilty. You don’t have to own other peoples’ problems. You don’t have to be everything to everyone else, when you have completely lost your identity in your own struggles. Don’t feel bad about unplugging, disconnecting and telling people you need some space. Caller ID is a wonderful thing. Don’t pick up the phone if you know the person on the other line isn’t going to be able to support you in the way you need to be supported. And cut out the people who aim to give you opinions, advice and resources that aren’t helpful. Lean on the people who get it. Find your person. Or your people. Immerse yourself in them, and allow them to take care of you, even if it’s uncomfortable. If they’re around for you, they want to be. They may not know what to say, but maybe being present and not saying anything at all is the best they can offer. And maybe it’s exactly what you need.

I remember in nursing school, learning through a textbook about different coping mechanisms. If you’ve ever taken a psychology course, you probably have too. You know, “appraisal focused” where you change your mindset and revise your thoughts, e.g denial. Then, there’s the “problem-focused” where you change your behavior to deal with a problem or challenge. And of course, “emotion-focused” where you change your emotions to tolerate or eliminate the stress. You can get defensive, you can avoid, you can attack, you can adapt. There are stages of grief we’re supposed to go through when faced with something like this.

1. Denial : This can’t be happening to us again.
2. Anger: I can’t believe this is happening to us again. I hear stories on the news every day of people throwing their babies in the trash. IN THE LITERAL TRASH. I hear stories of babies dying because their parents drugged them, beat them, MURDERED them. We have so much love to give. We have worked hard and we have so much more than most. Why. Why the HELL is this happening to us again?
3. Bargaining : Maybe this is happening because of something I did. Maybe if I stop drinking coffee, or I exercise more, maybe it could change or reverse the course of this horrible nightmare we’re in. Maybe it was because of medications I have been taking. I wish I could go back and undo it all. If only I could just go back.
4. Depression : Crying every day in the shower and before bed thinking about meeting another beautiful baby that we will have to say goodbye to. Thinking about his perfect little nose, cute toes, and broken little heart.
5. Acceptance : Peace. We know what’s going to happen. We have talked through all the scenarios ad nauseam. We have made a decision that we feel is right for our unborn son, for our family. We have been dealt a really shitty hand and it’s our choice how we handle it. There is nothing we can do to change what’s going to happen.

As difficult as these conversations are, and as much as I never ever in a million years thought I’d be having them with my spouse, they have come really easy for us. We have always had great communication and we are able to get on the same page pretty quickly. There have been a few situations where we’ve had to concede and we’ve had to compromise. But at the end of the day, we share the same fundamental beliefs and our decision came fairly easily.

We certainly do differ, though, in how we’re coping. I’m writing a blog. I share our story with everyone we’re close to. And some that we’re not. It helps for me to talk about it, because I cannot keep it all to myself. Barry probably thinks I’m an oversharer. He deals with things more quietly and keeps to himself. He doesn’t want everyone to “know our business”. Maybe because he’s not the pregnant one who has to endure ALLLLL the questions. “Is this your first baby?” “How far along are you?” “Is it a boy or a girl?” “You must be so excited“.

And so, I write. Also, I have discovered I’ve begun to subconsciously detach from the baby and the pregnancy. Man, it sounds awful saying that out loud. Someone asked me how far along I was the other day. I couldn’t actually remember. I think that the clock stopped at 17 weeks and 4 days. Obviously, I know it hasn’t, but in my mind and as some sort of dysfunctional coping mechanism, it has. So I’m writing this particular post at 21 weeks and 4 days. I only know this because I had an ultrasound yesterday.

I had no idea just how much I had detached from the baby until yesterday, when I went to the doctors and had an ultrasound. I began to sob when she took a snapshot of his little profile. “What a cute little kid”. The past four weeks he’s been a diagnosis. A prognosis. The centerpiece of the worst case scenario for any parent. And seeing his perfect little face was just too much at that moment. Because he’s an actual human. A baby boy we created, that we didn’t know we wanted until we found out we wouldn’t be raising him after all.

So many people keep telling me that I’m so strong. I have some work to do, though. I have to cherish the moments that I feel him kick. I need to think of this as my time with him. Where he is safe, not suffering. Where he is still alive. I need to change my mindset and revise my thoughts.

I’m not big on pro-con lists. Or lists, in general. I’m more of a work through it in my head kind of person. But now we were faced with the task of deciding what to do in the face of some really bad news. Our baby had a heart condition that could not be fixed. It was life limiting. And we weren’t candidates for a risky procedure while I was still pregnant.

So we weighed all our options. I was 18 weeks.

1. Voluntarily end the pregnancy. I was early. I could be induced and deliver naturally. We could see and hold him. We could make the decision to end his life now instead of dragging it out. This was our knee jerk reaction. And quite honestly could have been our fate if not for some unanticipated hurdles we faced. I’m not interested in hearing about a stance on pro-life. I can honestly say, there is no thinking straight when faced with this situation.
2. Continue on with the pregnancy and choose palliative and hospice care should the baby survive to term. How could I carry a baby for 9 months, give birth, and not do literally everything in this entire world to save him. The thought of ignoring every last motherly instinct and allowing my baby to pass away was daunting. But this would allow us to maximize our time with him. He wouldn’t have to endure tubes and lines and risky painful surgeries. His time on Earth wouldn’t be spent being poked and prodded and cut open. We could love him. To death.
3. Continue on with the pregnancy and choose aggressive and heroic measures. Consent to all treatment and surgeries with the hope that he would somehow survive. This could include being put on a heart transplant list. He would likely live in a CVICU for as long as it took for him to get a new heart. And then some. Or, he could pass anyways despite all the heroics we insisted on. We would have two children at home to take care of, and would have to split our time between the ICU, home and our jobs that of course would still be there despite the fact we had a baby who was dying.
4. Continue on with the pregnancy, with the expectation that baby would make the choice for us, and pass peacefully before birth.

People keep telling me to stop expecting he will die. To stop planning a baby funeral, but to plan on him coming home. To plan for “a miracle”. Because “You never know”. I don’t want to plan on him coming home, because I just know in my heart of hearts, that he’s not going to. I don’t know if I believe in miracles. I believe in making informed decisions with the information you have. Yes, babies surprise us. Yes, sometimes they do better than expected. Lauren is a great example of that. She is thriving and I’m so lucky to be able to say that. Everything about her diagnosis was a gray area. There was a high degree of uncertainty. This has been different. There is no gray area. Our baby has critical aortic stenosis, coarctation of the aorta, and a severely dilated and poorly functioning left ventricle. The minute he is born, his heart with fail, and he will die. It will take more than a miracle to change our course.

But there is something very wrong with your baby’s heart.

When we found out Lauren was missing her corpus callosum, I was beside myself. I didn’t even care that they thought there was also something wrong with her heart, too. Because hearts can be fixed. Brains can’t. I remember wishing that they were wrong, that she only had a heart defect. Please, don’t let there be something wrong with her brain. Her BRAIN for God’s sake.

How ironic, that on this day, my baby’s brain was perfect. But his heart. His heart was not. And I was about to find out just how ignorant I was about hearts being able to be fixed.

We found out at 17 weeks and 4 days that there was something very wrong with his heart. It was 4:30pm. They had set up an appointment for us the very next day at 8:00am for a fetal echocardiogram and a meeting with the perinatal cardiologist. The perinatologist walked us through what she saw that day, with the caveat that she was not a cardiologist and could not give us anything more than her observations. The left side of his heart was really big. Bigger than the right. And it wasn’t pumping. Something was keeping it from pumping, and she didn’t want to guess what exactly it was.

I went home and googled like crazy. The one thing I tell my patients not to do.

Cardiomyopathy. Dilated cardiomyopathy. Hypertrophic cardiomyopathy. Hypoplastic left heart syndrome. Coarctation of the aorta. At this point, I was guessing. And reading about my guesses weren’t helping me at all.

The next day, we went for the echo. It took about two hours. I was friendly with the sonographer because she had completed all four of my fetal echos with my daughter. “Baba” was her name. There was a medical student there that day, observing. A good chance for her to see a really sick heart, I thought. We talked about all the crazy heart anomalies Baba had seen in her years of doing this. I have really developed a love for cardiac and cardiology in my years of nursing. In fact, I am board certified in cardiac-vascular nursing. It’s fascinating and I love it. So all of her stories not only interested me, but they passed the time. We talked about how with Lauren, they “thought” she had coarctation of the aorta, but they weren’t sure. About how when she was born, they discovered that they were wrong. In the next breath, Baba told me she was sure that the doctor would be able to tell us exactly what was going on with baby boys heart.

So we sat in the consultation room for what seemed like forever. Again. I don’t even remember what we talked about, but Barry was getting ready to leave in a few weeks for the next Coast Guard patrol, so I imagine that we were recapping the to-do list of things that needed to be accomplished before he left. I don’t think either of us thought that planning for all of the scenarios where our baby was going to die would be part of that list.

The cardiologist came into the room and immediately grabbed a box of tissues. One for me. And one for herself. Yikes.

“So what have you been told so far?”

I explained that the perinatologist had told us there was something “very wrong” with the baby’s heart. I knew enough to know that the fact his left ventricle wasn’t pumping was a really bad sign. But, I was only 17 weeks. It’s early, right? Maybe there was time for it to be fixed.

I remember her looking down, having a difficult time making eye contact with us, and apologizing, saying “I’m sorry. This is still so hard for me to do”, and began to explain what was wrong with our baby boys heart.

He had something called aortic stenosis. The valve between the left ventricle and the aorta was hardened, or stenosed. Because of this, the left ventricle had been working extra hard trying to overcome that pressure. It had dilated, or grown, and the muscle tissue had hardened and become scarred. Shit. Not only that, but because this had happened so early, his aorta (the main blood vessel that feeds the body) was really really small. Double shit. She explained there were different degrees of the aortic stenosis. There was mild, moderate, severe. And even worse than severe, there was critical. We were 17 weeks and 5 days. Baby boy’s aortic stenosis was critical. Shit shit shit.

She explained that there were a few surgeons that intervened while baby was still in the womb. A surgeon in Boston performed a fetal balloon valvuloplasty, where the mother was put under general anesthesia and the baby’s heart is actually operated on. She explained that when they first began to do the surgery, they took far too many candidates and since then have really gotten particular about the kinds of patients they take. Because it’s so risky to the baby, they need to have a somewhat high degree of confidence that the procedure would change the course of the baby’s condition. The potential benefit had to outweigh the risk of losing the baby as a result of the procedure. She was almost certain we would not be candidates, but she was willing to confer with the surgeon in Boston anyways.

I knew that it was bad. But I didn’t know it was this bad. Very very poor prognosis. Life limiting. Incompatible with life. High probability of death before birth.

Lightening had struck twice. And all that bad stuff that never happens to us, was happening. It was happening and there wasn’t a thing we could do about it.

Child and infant loss is a terrible thing that we only read about. It’s a GoFundMe page for a friend of a friend who just lost their child. Or a distant relative who just had a miscarriage. It’s almost taboo to talk about it. “Parents should never bury their kids”. In a perfect world, this would be true. Tiny caskets. Little baby urns. The insurmountable task of planning a funeral for a baby. It’s something that happens to other people. Never to me. Until, of course, it does.

I’ve had a life full of “it won’t happen to me” moments. I’m a nurse. It’s both a blessing and a curse because I know just enough to be dangerous. So that feeling of helplessness and apathy after my first son was born, it wasn’t postpartum depression. Because PPD is something that happens to other people, not to me. Those two pink lines that were fleeting and disappeared after a series of miscarriages. Miscarriages and infertility happened to other people, not to me. Being sent to Maternal Fetal Medicine when pregnant with my daughter for a “closer look”, was just a precaution, because having a baby with birth defects was something that happened to other people. not to me. Hearing “I think your baby is missing part of her brain” was surely a mistake. A limitation of technology, a limitation of SOMETHING, because that is something that happens to other people, not to me. You’d think I’d have got it by now. I’d have taken the hint. But after all, they say, lightening doesn’t strike the same place twice. Until, of course, it does.

After my journey with my daughters pregnancy, you’d think I would have been an absolute wreck the day of our anatomy scan at the MFM office. We had just seen them a few weeks prior for the first series of genetic ultrasound testing, and left with an “everything looks perfect!” farewell from the perinatologist I knew so well from my daughter. I was calm and not at all worried about this appointment. My husband was there with me, and while baby #3 was a complete surprise, we had both began to get really excited about growing our family. We knew it was a boy (due to a little hiccup at the OB office) and were already playing through all the sibling scenarios in our heads. We both came from families with only two children. The thought of three was foreign, but we figured that if anyone could handle it, it would be us. We saw baby up on the screen and were joking with the ultrasound tech the whole time. Of course, the first thing I asked was to look at his brain, which looked perfect. CUE: SIGH OF RELIEF. “You’re sure that you see is Cavum Septum Pellicidum?” I asked. The tech laughed “I’ve literally never had anyone ask me that before”. Of course, I was a CSP expert because it was the first sign something was wrong when I had my ultrasound with Lauren. The baby wasn’t cooperating, so the tech decided that she would go and get the doctor because “sometimes the moment we bring in the doctor the baby shapes up and gives us what we need!”. About 20 minutes later, we were still waiting for her to come in. My husband remarked that he hoped there wasn’t something wrong with the baby, since it was taking so long. I told him not to be so dramatic, and that everything was fine. Because having a baby with a fatal condition only happens to other people, not to me. Until, of course, it does.