So, I've thought long and hard about sharing this information. It's a unique part of Beanie Girl's journey. What sold me on sharing this a) is that it's so incredibly rare, perhaps there is some other family out there that could use the information, and b) I've been an advocate for PCOS for so long, it seems wrong not to crack the window to it when it hits home. I'm now experiencing it from an entirely different angle -
Following the legacy of 'the Impossible Girl' that she is, Beanie Girl has shown up with a condition that even the radiologist and pediatrician had never heard of.
Now, I don't have a lot of experience with infants this small, but meeting her needs thus far has been pretty simple. Feed her. Change her. Keep her warm. Love her. The basic demands of an infant are all there. She's pretty easy going (which we appreciate!). She is about six weeks old now, and sleeps well, nurses well, and is the resident expert in being adorable. While she struggled to put on weight during her first to weeks of life, she's now up to a whopping 8.6 lbs and is (finally) nicely filling out her newborn clothes, and starting to no longer wiggle out of 0-3 month clothes.
She's busy growing and being adorable and doing all the usual baby things - hitting milestones a bit before their time. A bit of an overachiever, she's wasted no time in confounding her doctors.
About 2 weeks before she was born it was confirmed via ultrasound that she had what was thought to be a 7cm cyst on her ovary. That's right - her
ovary. To give you readers some perspective, the ovary of an average adult female is only about the size of a walnut.
A 7cm cyst on an adult is large. The large growths that necessitated the removal of one of my ovaries was only 9 cm. There she was, not even born yet, and already outdoing her mom.
If that wasn't scary enough, the information out there about this type of condition is scattered and largely unhelpful. With a medical background, I have many resources. Research is my friend, but in this case, the research from the USA is completely and utterly mixed. (Here's the link if you're interested enough to read the report.
) The report speculates that this condition is more common in children than we may think; we just now have the technology to catch it. While that's a little bit comforting (and makes me wonder what they would have seen on me had that technology been widely utilized in the late 1970's) the news regarding cysts her size was alarming.
To save ya'll some heavy duty reading, here are the concerning findings from that study for us
"...large cysts are reported in 20-34% of newborns who succumb within the first 28 days of life."
For the purpose of the study, 'large' is defined by 4-8cm. 8 was the largest one they found... Anyway, obviously Beanie Girl made it through her first month of life with flying colors.
While complications occurred in 34% of the study's participants - "The most frequent and frightening complication of simple cysts is torsion of the ovary."
Torsion is when an ovary twists on itself, cutting off blood flow. It's vomit-inducingly painful and comes in with little or no warning. The large cyst IS
the warning. When/if the ovary goes into torsion is any one's guess. While many adults have large cysts that don't result in torsion, they are more developed. Little humans are a bit more delicate when it comes to organs. Either way, adult or child, the result is the same. The offending ovary is removed. Having an organ (even one you have 2 of) removed is MAJOR surgery. (Trust me on this one - I know!)
"Other complications are intracystic hemorrhage, rupture, dystocia during
birth, pressure on nearby structures such as blood vessels, uterus,
intestines and urinary system."
Don't those sound like fun? Not...
Thankfully, she dodged many of them in utero, and continues to.
"Neonatal ovarian cysts may cause pain, irritability, vomiting, fever and
abdominal distension. Peritonitis, anemia due to intracystic
hemorrhage, fetal tachycardia due to peritoneal irritation or anemia,
and sudden infant death syndrome may also occur."
Before I scare everyone, they don't KNOW what causes SIDS. If they did, it wouldn't be called SIDs, it would be called whatever-it's-caused-by. But needless to say, this requires some extra monitoring and caution. When she gets a fever, even a low grade one, we're monitoring it. When her stomach gets bloated (which is completely normal when a newborn eats), we're watching to make sure it goes down within a reasonable period of time. When she's crying, we're quickly running through everything to try to resolve it, because if we suspect it's caused by intractable pain, we're on our way to the ER.
Here's What This Means For Us
Since we know about her cysts, we can keep an eye on them.
Her first ultrasound (before she was born) showed a 7cm cyst. Her last ultrasound (about a 10 days ago) showed a 4x5cm cyst and a bunch of small ones where the 7cm one used to be. We're taking the conservative approach and watching and waiting. We need to go in every 4-6 weeks to monitor them. The hospital for the ultrasound is in Tacoma - about 45 minutes away from home - and we need to keep her NPO (nothing by mouth) for 4 hours before hand.
Though we know they aren't hurting her, it's far from 'fun' to hold her down while she screams in hunger and confusion on the ultrasound table...for over an hour... (They finally let me crawl up on the table and feed her as they tried to finish up their imaging...I get cranky if I go 4 hours without eating or drinking. I can't imagine how it must feel to a then-1-month-old! But I digress...)
So, here's where the conundrum lies -
Small cysts studied usually shrink on their own. About 1/2 of the large cysts in the USA study (which only included 14 patients in 2 hospitals) required removal of the ovary due to torsion within the first 10 days of life. So we are somewhere in the middle right now. She still has a large simple cysts, but it's possible it's shrinking on its own.
We are banking on that.
Only time will tell. I hate to put all my eggs in one basket, but this is really the direction things take... Let's not find out if she Keloids too, please.
Now, when I had issues with my cysts I was older. I could tell folks what was happening. I could tell them my back hurt, my stomach hurt, I was nauseated, etc...
We have just become Beanie Girl's translators.
This makes things like childcare a bit more challenging. Babies cry (seemingly) inconsolably for LOTS of reasons. But we don't need our sitters to 'tough it out'.
We need them to call us if they can't discover the cause of the tears. Torsion, left unchecked, can quickly become a life-threatening situation - especially in someone so little.
Every time she comes down with a low grade fever (common for someone who is doing a lot of growing) or has a gastric issue (common for someone just getting used to, ya know, digesting), we're to call the pediatrician's office.
All of those could mean big things for her.
|A Bean and her Boxer|
But we're lucky
. We have a team of physicians who admit
they don't know everything and are up for the challenge of researching and learning about this with us - rather than a team who ignores what they don't understand. Stumbling upon a good team is truly a gift.
"I talked to the Radiologist after they talked to you and she said she was relieved. She said [Beanie Girl] has the perfect mom for her condition." - Dr. Awesome, Beanie Girl's Pediatrician, today.
Okay, let's talk turkey here.
The reality of genetics is that Beanie Girl might not even have
this condition if she was born to anyone else. There is a good argument for PCOS and similar conditions begin genetically passed on, but I don't blame myself (or my heavy back squats - which didn't cause, help, or hurt the situation, for the record). Blame is non-productive, utterly useless, and a waste of energy (and energy is hard to come by these days!). I believe she is supposed to be with us or we wouldn't have been able to have her to begin with. Science told use we shouldn't be able to have kids, statistically. We didn't use any advanced medical methods to have her. She's here because she's meant to be and that's all there is to it.
Having had rather extensive experience on ovarian cysts (including decades of research), I have a few tricks for controlling them up my sleeves. However, they make things like formula an absolute no-go
which, at the moment, isn't a problem since she's exclusively handling boob-juice like a champ. But in the future, we'll be avoiding/limiting her soy intake, since she's now prone to these cysts, as well as foods that encourage inflammation. Staying lean seems to help most 'cyst'ers, and I'm sure research will continue to turn over new ways of avoiding the complications they cause. While I feel that women's medicine is still (largely) in the Dark Ages, there are shafts of light from time to time.
This is just part of her journey.
|Out and about on a rough day|
And, whatever form or path this journey take - we'll be there for Beanie Girl.
After all, she's our Impossible Girl.
*Bonus points for those who understand the DW reference.*