Pre-natal brain disorder diagnosis - Corpus Callosum Agenesis
September 25, 2017 1:09 PM   Subscribe

Expecting our second child; went for 20 week ultrasound today, and emerged with a diagnosis of suspected brain abnormality - corpus callosum agenesis or dysgenesis. Just about managed to hold things together picking up no. 1 from daycare and through bedtime; now sat attempting to deal with the brute force impact stress, angst and helplessness of this. Looking for anything people can tell us about this specific condition, in themselves, as parents or professionals, or more generally about dealing with similar bombshells during pregnancy.

There will be extended tests and medical counseling in the weeks to come. The internet tells me that the possible outcomes of this condition are a broad spectrum from relatively minor to horrendous, and that there are many words that have been written about these. At some point I will read those words, but right now there's just no processing functionality left in me.
posted by protorp to Health & Fitness (9 answers total) 5 users marked this as a favorite
 
I MeMailed you, protorp.
posted by emelenjr at 1:32 PM on September 25, 2017


I have no experience or advice whatsoever, but my heart goes out to you. Best of luck in this difficult time.
posted by crazy with stars at 3:09 PM on September 25, 2017 [2 favorites]


I wish you all the best in this time and in the future.
posted by MovableBookLady at 3:36 PM on September 25, 2017 [1 favorite]


I am so sorry. I have no words for what you're feeling now. All I can say is that I have a friend whose child has agenesis of the corpus callosum, and she is on the mild end: she's not totally "normal," but she is in an ordinary 3rd grade class, can read, and is very sweet. She has other medical problems, though, and needs way more sleep than an "ordinary" kid. (Some of us, with bad-sleeping-kids, would take that last as a blessing.....)
posted by kestrel251 at 5:30 PM on September 25, 2017


I am holding you in the light.
posted by songs_about_rainbows at 6:00 PM on September 25, 2017


As someone who went through similar bombshells (second pregnancy my child diagnosed late in pregnancy with anacephaly, then a year after her death I had a normal pregnancy/birth, and then the second pregnancy after that one had late-term indications there was also possible neutral tube disorder - fortunately born healthy)... choose well who you tell. Unfortunately, all of my family, including my husband and his family, are extremely anxious, overly dramatic, narcissistic, and were incapable of offering me any support either time. So I was very, very alone during both ordeals where *I* was expected to hold it together, offer THEM support (especially my useless in-laws) on top of continuing to be the breadwinner and take care of my living kids while everyone else spent days and weeks rending garments and crying on my shoulder. If you have a strong friend you can trust, lean on them, or look for professional therapists with grief experience. In retrospect, I wish I had told no one. However, I am very good at compartmentalisation and just plowing through. Know yourself and know what has given you strength in the past and use that now. If you have it, throw money at the problem - get more childcare, eat out, go away for the weekend if it will help you. Even if the secondary tests turn out all right, allow yourself to grieve what could have been a worry-free pregnancy and be gentle with yourself.

I wish you love and luck; regardless of the outcome, you will get through this.
posted by saucysault at 7:09 PM on September 25, 2017 [13 favorites]


You will probably get more medical information from doctors and the Internet than you can handle over the coming weeks and years, and I've got no specific knowledge about this condition. I do, though, have a daughter who suffered a brain injury around the time of birth. A bunch of her symptoms overlap with what's listed on the Wikipedia page you linked to - delayed development, seizures, mental retardation, low muscle tone, feeding difficulties, etc.

She is sometimes delightful, sometimes frustrating, sometimes anxiety-provoking. She is her own person, with a love for Thomas the Tank Engine, her trike, basketball, grocery carts, and riding in cars. (Anything with wheels, really.) She usually doesn't like eating or getting dressed in the morning, and can get quite grumpy about it. Swimming is another thing she loves, though the risk of a seizure means that she always needs to have someone within arm's reach at all times in the pool. She's still in diapers. When we draw stick figures, she always has a ponytail and I always have glasses.

That's her now, at eleven years old. She grew into herself more slowly than most kids. It was a long time before she could walk or crawl. It was a long time before my talking her to sleep at night produced any reaction, until that one night when her face lit up when I talked about the swing at the playground.

The first couple of years involved constant appointments. My calendar was full of doctors and therapists. (One month I counted more appointments than there were weekdays.) In some ways it felt like the most important thing I had ever done, and in some ways it felt like a grind that was squashing everything that was me out of me. Having my mother with us, with her calm, quiet, steady help, every single day, was a huuuuuuuge help. I'm not sure I could've done it on my own.

It is socially isolating, just because so much of my energy and time was/is tied up in taking care of an infant who stayed an infant for a long time, and then a toddler who has stayed a toddler for an even longer time. It also gave me clear purpose and focus, something that I had generally lacked.

The most important thing is that she's a person; unique; someone with whom you'll have to discover what the relationship will be. There will be developmental guidelines galore from doctors and therapists; some of them will be extremely helpful (for us: sign language! core strength exercises!), and some of them won't apply to your child at all. Getting to know your child is the important part of sorting through all the advice you'll be given. And some of the most important things about your child won't matter to any of the doctors and therapists who are involved; they'll just matter to you.

If you decide to continue the pregnancy, you'll discover who the most dependable people in your life are, and you'll get to know a new person. You'll be underwater for a few years, and then you'll come up for air a different person. Better, worse? I'm not sure. But different.
posted by clawsoon at 7:55 PM on September 25, 2017 [20 favorites]


My niece/godchild was born with both hydrocephalus and corpus callosum agenesis. From a medical perspective, the scariest time was just after birth, with worry about pressure on her brain, but she and her twin were also about 8 weeks premature. She's an appealing and friendly kid who endears herself to all. That said, she's had vision and hearing issues and both developmental and physical delays. She was about two years late on most milestones but she has still been able to attend mainstream schools; she just turned five. The army of therapists (physical, occupational, speech) clearly benefitted her. I'm going to visit
her this weekend; if you like, I'll ask my brother, who happens to be a pediatrician specializing in a related disorder, if he'd be open to talking to you about his experiences both medical and personal.
posted by carmicha at 10:59 AM on September 26, 2017


Hi there, sorry I'm so late to this post, and I am so sorry you are going through this. This was us almost 5 years ago, and I will never forget how awful that time was. My baby got his diagnosis via newborn screening after he was born (4 weeks early), so we didn't have any time to prepare. We got the phone call after he had been discharged from his 2nd hospital stay and we're told to go immediately back to the hospital, and then we were pulled along the treatment pathway from there. So you do have some time to find meet your baby's future care team and develop a plan for delivery and next steps - take advantage of it.

The main things I've learned on our journey are:
* every child's case is so different, even with the same diagnosis
* the range of symptoms/severity can be quite broad, and someone's got to break the curve - it may even be your child
* you will feel closer to your child's medical team than your own friends or family in the first couple months. It is what it is.
* unfollow all friends on Facebook who post about their healthy babies/kids if you need to. I couldn't handle it, so I opted out.
* you may not know the severity of your child's disorder for months and years, and that state if worried limbo is so unnerving - reach out to therapists for help, and quickly fire the bullshit therapists who question the severity of your situation and make you feel like shit

Memail if you want to reach out later. Hugs to you and yours.
posted by Maarika at 2:24 PM on September 27, 2017


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