advice for the medically-complex sibling experience

I was a late life surprise--born 10 years (almost to the date) after my mom was told she physically couldn't have kids anymore. Uh, surprise mom. I have two siblings, both more than a decade older than me. I was a complicated, sickly kid, and it made me withdrawn and uncomfortable being away from the comfort and routine of home. I was diagnosed with Crohn's disease when I was 11 and that at least made things clearer. Medical therapies then sucked, though, and for a few years I think I was worse off in some ways--very sun sensitive, body and mind warped by megadoses of steroids, constant endo-/colonoscopies and various clinical strangers poking my butt in rooms full of medical students, no counseling on the role of diet so always nauseated and waifishly thin, and so on. I was not made particularly humble by all this--if anything, I resented my healthy family members. I think I made life hell on them intentionally for a while there. When I was around 13/14, I sought out a doctor who was also a registered dietician who helped me put together a food diary and taught me all about my condition and my role in it. I went vegetarian, and then vegan, and omg things got much better. I slowly emerged from the hole I'd grown up in. My siblings had been long out of the house by then, but they had responded differently. My brother more or less vanished from my life (and that's totally ok), but my sister became a second mom/caretaker and is today one of my closest friends. That'd be my takeaway: people in every family deal with complex health issues, and people will respond differently. One can't anticipate how these things will go, and I don't think you should worry to much about trying to do so. I would encourage you to seek amnio (etc.) so you have a full complement of info going into making another baby. Whatever you do with that info is up to you, but even knowing in advance that you need to be prepared in a specific way for your next young 'un is a help. The most terrifying part of my upbringing was the years of not knowing what was happening, but also being trapped inside a kid brain that has a very naive level of understanding about adults and their capacity for honesty, dishonesty, preparedness, unpreparedness, etc. This is all stuff that is formative for adult personas, and since I can't change how it played out I've learned to appreciate it for the role it played in making me the well-adjusted person I am today. I think my siblings and parents would probably agree with that assessment.

It didn't do me a lot of good. I did have some resentment that things we could do as a family were limited by my older sibling's disabilities. But more serious was that I was somewhat traumatized by his continual medical crises, and grew up feeling that it wasn't OK to make my needs known, because I didn't want to add to the family's troubles. That was also due to our father's early death, though, and it's hard to say how much came from what. On balance though I'm fairly happy to have been born.

I'm the much younger sister (by 10 and 13 years) of two older brothers whose substance use disorders began very early in their lives and escalated as they got older (as these things do). So my situation is different, but I think there are some things it might have in common with your toddler's hypothetical younger sibling. My parents were always hyper focused on my brothers and their troubles. They worried constantly about my brothers, talked constantly about my brothers, and gave the bulk of their attention to my brothers. They loved me, don't get me wrong. But I always felt like I was less important than my brothers. Plus, I felt like competing with them for my parents' resources would be wrong/unfair. My brothers were clearly way worse off than I was. I was a good kid, and from a young age I was fairly good at taking care of myself (probably out of necessity). If I wanted money for something, it was like... for spending a day hanging out at the mall, or going skating with my friends, or going out for pizza with my little clique. If my brothers wanted money, it was for clothes to wear to a job interview, or to make their rent, or to bail them out of jail. Every holiday was disrupted because my brothers' issues made them highly disruptive people. No matter how perfect I tried to be -- and believe me, I tried to be really perfect -- there would be a point every Thanksgiving or Christmas when the family dynamic would break down and there would be fighting and yelling and anger and crying and it was just awful. As soon as I got to college, I stopped going home for holidays altogether, and have made lame excuses not to go home for holidays ever since (and it's been a lot of years since college at this point). Instead I visit before or after the actual holiday, so I can stay out of that angry fight-soup atmosphere. I remember calling my parents out one time while I was in college; they kept demanding to know why I couldn't be home on Christmas day, and I finally snapped and told them. I told them basically everything I've said here - which probably comes down to feeling like I was always in third place in the family because my brothers were always tied for first. It came as a total shock for them, probably because a lot of the attention my brothers got was negative. But it was still attention, you know? Based on my experience, I think this could be key for you. Because it was never about not understanding my parents reasons for giving my brothers all their attention. The reasons made sense to me. But my brothers having big major needs didn't make *my* normal kid needs any less real. It just meant my needs didn't get met as often in this particular family, and that had a big effect on me. And it still does.

My four-years-younger sister went through quite a bit of medical complexity while I was in high school, and, while her experience was obviously way worse, I had a pretty shitty time of it. My parents were basically absent for my junior and senior year (often literally, as my sister had to live in another state for a couple of months to see a specialist,) and she spent the winter vacation having surgery two or three years in a row. For at least ten or fifteen years after, I had a PTSD-ish reaction to the Christmas season. (I still hate it, but it's less life-disrupting now.) Fortunately her issues were more or less solvable (or, at least, the recent hip replacement should mitigate them for another twenty or thirty years) but it was not a good experience even as an independent older sibling. I can't even imagine what it would have been like to be the younger one. The short version: life as the sibling in the situation sucked hard for me, and I'm talking about a *vastly* less pervasive and serious situation.

I was born with eye problems in one eye and my younger brother did not have health problems. I did get more attention than he did growing up, and acted like a spoiled brat as a young adult for longer than I should have. I don't know if these two things are related. When I got pregnant, the maternity hospital suggested I have an anomaly scan, because of my congenital issues - before that moment, it didn't occur to me that I would be 'responsible' for passing down a painful condition to my child. It turns out I have a mild collagen disorder which could be the root cause of my eye problems as well as hip dysplasia. I'm not sure this answers your question, which was specifically about siblings. But I would not want for my child to suffer the pain I have, if I could avoid it. We stopped at one, even though I have sometimes wanted another one. Having said all that, this is your family's decision, not anyone else's. I wish you the best.

My situation was not exactly similar to what you're asking, but perhaps will be helpful. My older sister was "fragile", both physically and emotionally. Even though I was 2.5 years younger, people could understand me speaking better than they could her. As a child, I resented the hell out of how she sucked up all the oxygen and attention, so I was probably difficult and tantrum-y far beyond the age when that stuff usually dies out. Looking back on it now, as a (ahem) mature adult I realize that the experience really fostered a sense of independence in me. I learned early on that I couldn't necessarily count on my parents or anyone else, for that matter, for support. It also drove me into pursuing psychology as a career and drew me into self-awareness workshops which has paid off in spades. And she's *still* fragile both physically and emotionally, although I tend to refer to her as being "prickly". The other consequence, now that I think about it, is that I connect easily with, and have tremendous empathy for, other children who grew up in the shadow of a needy sibling.

I have a homozygous recessive genetic disorder. My oldest son has the same thing. My youngest does not. When I was having kids, I did not know I had it and my oldest son was diagnosed because I was finally diagnosed in my mid thirties. Unlike when two carriers reproduce, when a person with the disorder reproduces with a carrier, the odds are 50-50, not 1 in 4, of having a child with the disorder. I knew none of this when I was making reproductive choices. My oldest son was really needy and I was extremely inclined to dote. This worked well, given his health problems. My younger son is an introvert who would have put an axe through my face if I had doted on him the way I doted on this brother. This was a hard thing to adjust to, that he was so much less needy and also wanted me out of his hair, by god. It was a lot harder for me respect his boundaries and give him his space than it had been to go all in with dutifully caring for a sickly child. For unrelated reasons, I later ended up homeschooling both sons. This gave us a lot of flexibility to accommodate the needs of both kids. I was fortunate in that I was able to be a full time mom and homemaker for about two decades and my husband's military career made most medical care free (or extremely cheap). I did work hard at making sure to meet the needs of each child and to recognize that they had very different needs. I did at times point out that I made an effort with my youngest since that effort was a lot less apparent. For example, he is lactose intolerant but loves milk. I made an effort to make sure there was always lactose reduced milk at home, something mostly consumed by him and bought specially for him. My sons have a good relationship with each other. They are in their twenties and very close. We all three get along well and I don't regret having them both. In fact, I had the second child in part because I felt strongly my first child really needed a sibling. He is not good with the social stuff and does not readily bond with other people. He has a strong relationship with me and his brother and that's about it. I think he would be a lot less functional had he not had a sibling and his life would be a lot more problematic. He would also make me a lot crazier. He seems to never shut up and it helps that he has two people to talk with so it is okay for one of us to go "Yeah, I can't take this anymore. I need a break. K? Thanks." This kind of question comes up a fair amount on discussion forums for the genetic disorder I have. People really wrestle with questions like whether or not it is ethical to have another child now that they know they are both carriers and there is a 25% chance that any child they have will have the disorder. FWIW, I have come to believe that, in some sense, that aspect is given too much weight. Historically, having children was so much more likely to result in mom dying or a child with a big problem being born or simply being a high burden on a family in a subsistence culture because there were just too many kids. We have kind of arrived at a point where we have this unrealistic expectation that all children should be healthy and "perfect" or something, as if that is baseline "normal," and it just is not and never was. Of course, that's easy for me to say. My reproductive choices were made in a state of "ignorance is bliss." I originally wanted three kids and stopped at two because I was always sick and my oldest was a big burden to raise and I didn't feel there was enough to go around to have and raise a third child. So it is not like the health issues did not impact my reproductive choices. But it was a pragmatic choice, informed by the reality that there was only so much time, energy and money and we were already stretched thin. It did not have this extra layer of having a scary label attached to our medical problems and the knowledge that the odds were 50-50 that another child would also qualify for the same scary label. Best of luck.

As a sibling of someone with special needs (rare, life-threatening cardiovascular disease + intellectual disability) who has also been an active participant in the support community, I think this paper would be extremely valuable for you to read: https://www.siblingsupport.org/documents-for-site/WhatSiblingsWouldLikeParentsandServiceProviderstoKnow.pdf. Some sibling experiences leave deeper imprints than others, but one thing's for sure: we will always grapple with a swirl of inner conflict that rotates guilt, starvation, sadness, resentment, gratitude, joy, isolation, anger, and profound meaning. It's important that you give the sibling(s) healthy ways to cope with their demons, peers to relate to, and information about the looming future. Things will get harder as the "healthy" or "neurotypical" child grows into an adult, reaching milestones that their siblings may never hit, and they may end up internalizing the struggle altogether. My parents are amazing but they didn't do this part very well, and I don't knock them for it and have since tried to individuate. They had so much going against them. Another thing that I learned from therapists was that when one child is struggling with a serious illness or condition, sometimes the other healthy sibling develops symptoms as well (mentally, physically, emotionally). I can attest to this. Whether these health ramifications are phantom/psychosomatic conditions, manifestations of stress, survival mechanisms to cope with a lack of care, or legitimate issues that would've surfaced either way, I can't say. I'm no professional and this is hearsay. But I also studied resilience theory back in college and for the most part, I remember the outlook is pretty promising. The upside is that we are immensely resilient and weathered (in a good way). We have perspective, we are independent (sometimes too much), we are more self-aware and perceptive, and we are more grounded about realities of life. I began therapy quite late (early 20's) and am always astonished at how many unrelated issues stem being a sibling. It affects my career, my love life, my friendships, my self-esteem, my relationship with my parents, my health...everything. I vacillate between feeling like I grew up as an only child, a third parent, and a sibling in the shadows. Like many others, I definitely needed more support than I got. But at the end of the day, I consider myself immensely lucky because my sister is the light of my life and I truly don't think I'd be the kind of layered, dynamic person I am today without her influence. However, I do have a lot more muck to wade through than the average sibling, and that gets burdensome. I know of a few parents who were overwhelmed with their first special needs child and decided against more, but the "what-ifs" do haunt them. I also know of a couple in your position who kept having children, only to discover that all three were born with disabilities. They're a rambunctious bunch and the parents struggle with depression, but they make it work. I also know 100% healthy families who are really dysfunctional, where absolutely no one is happy and they don't have a need to be a united team. There's just no clear answer to this one -- especially if you're not inclined to make a faith-based decision. You guys are already so conscientious. That's a good sign. I can promise there will be beautiful, hope-giving, surreal, moving moments if you have more kids, but it will not be smooth sailing for anyone involved. So maybe it's a matter of how big your plate is. Are you ready to embrace all hypothetical scenarios? Are you considering a second to soothe yourselves? Are you and your partner confident that you can provide a loving home and do everything in your power to give your next child the attention s/he needs and deserves? Either way, keep us posted. Wish you the best for your budding family.