u/Leockette

Long story short. My sons an I (35F) are in limbo for a diagnosis.

My youngest is a premie (now 10 months old but 7 and a half corrected). While in the NICU, they suspected Marfan because he's quite tall, has long fingers and hernias. During the hospitalisation, we had a genetician consult. We were mostly asked about our family medical history. The doctor was quite reassuring.

A couple months ago (about 6 months after the discharge from the NICU), we had a follow-up appointment with the genetician. He brought up Marfan again.

I'm positive for the wrist and thumb signs. He didn't calculate my Ghent score. The doctor asked me to get my aorta checked. Based on my age, if I do have Marfan, it will be dilated and we will pursue with the genetic testings.

My cardiac echo is set in december (about a year after the NICU discharge). I feel very frustrated by the delay.

I was also bummed that my oldest son (2yo) wasn't evaluated. He's way taller than his younger brother, consistently at the 99th percentile for height since birth. So I pushed to got a referal for him to see a cardiologist.

We just had the appointment. His aorta is on the high end of the normal range. The cardiologist want to see both kids again in a year (my youngest's aorta was fine when it was measured while in the NICU).

I was hoping to get some reassurance but it's not looking good.

I've been lurking on this sub for quite a while now. I don't know exactly what I'm seeking by posting this.

Has anyone been thought something similar? Any positive stories about toddler with enlarged aorta? How about folks with late diagnosis (mid 30s like me)?

I'm feeling pretty defeated right now.

Thanks.

Bonjour à tous,

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Je vous épargne les détails superflus mais je suis impliquée dans une succession compliquée.

Des raisons m'amènent à penser que des contrats d'AV ont été souscrits au profit de tiers, notamment d'un autre héritier réservataire.

J'ai conscience que les AV n'entrent pas dans la succession. Mais je voudrais m'assurer que l'on n'entre pas dans le cadre des primes exagérées et qu'il n'y ait pas d'atteinte à la réserve héréditaire.

Malgré mes recherches sur le sujet, je suis un peu perdue.

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Comment effectuer cette démarche? Quelles sont les pièces justificatives?

Pouvez-vous me confirmer que l'identité des bénéficiaires restent confidentiels?

Quelles informations sont fournies? Ex: montant, date de souscription, etc.

Puis-je passer par le notaire?

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Si besoin, je peux apporter quelques éléments de contexte supplémentaires.

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Par avance, merci pour vos éclaircissements.

Our second son was born unexpectedly in october at 30w0d. I was diagnosed with polyhydramnios and gave birth spontaneously within 48 hours.

He left the NICU at 38w1d (57 days stay). Overall he's doing great minus a couple things that are managed and pretty standard for premies.

Our son was born on the 1st anniversary of the death of my brother in law who unexpectedly passed at 30yo.

My other brother in law expected a baby at the same time of us (due date about a week prior to ours). He's been in a poor mental state since his brother's death. He got very anxious over our son's prematurity which I understand given the circumstances.

I ran into him yesterday. I was carrying the baby who's now about 4 months of corrected age/ 6 months and a half of actual age.

We're both busy with young kids. So he had only seen him once before at his daughter's birthday 2 months prior.

Yesterday, he gushed over my baby. He said something like "He looks like his cousin. There's something. Oh that's nice and reassuring. You look good and you're holding your head now. You look much better now that you did at the birthday. Compared to [his son's name] we noticed the differences and got concerned. Aww, it's nice to see" (rough transcription and translation).

I know he meant well but I was baffled.

There's no concerns about my baby's development (so far). He's doing great. Every medical staff we've met said so. My son is pretty tonic and social. He was holding his head already back in march at that birthday.

I keep replaying that day. Why did my son inspired his uncle pity? He's kind of pale because he's anemic (which is pretty common for premies) but that's hardly noticeable. The baby cried a lot in the car to get there. So he was teary eyed and not as smily as usual. To be fair, he was sleepy most of the time we were there (a couple hours). But that's no reason to assume he's delayed. He was 2 months old for goodsake!

I'm really hurt. I'm sick of the stigma.

And I'm kinda concerned that my in-laws either think given my son was born one year After m'y BIL died that:

- it's a blessing, a sign from my BIL who protected him like a guardian angel

or

- it's bad duck, all doom and gloom.

Both are toxic. It sucks.

The only photos of us as a family of 4 were taken at that birthday. I don't think I can ever look back at them. How could I now that I know that the host and probably other attendees took pity of my son? Those memories are forever tarnished.