Tiffany and her poly baby

Tiffany's Story: A Mother's Instinct is all you Need

Tiffany and her poly baby

A Mother's Instinct is all you Need

Hi, I’m Tiffany, the creator of polyhydramnios.org and Co-Founder/CEO of Know Polyhydramnios and this is my story. I experienced mostly moderate polyhydramnios with just a few weeks in the low severe range. During my pregnancy, I experienced an unsupportive doctor and postpartum complications with both myself and my baby that I was not prepared for and didn’t know how to navigate. Now, I’m hoping my story will caution other mamas to be their own best advocates. I want to use my story to help other mamas to feel more prepared, more in control of their circumstances, and better supported as they journey through the unknowns of poly.

My Story

My Poly baby was our 7th baby, but my 8th pregnancy. I was 36 when I got pregnant so I was considered high risk from the beginning. Despite that, the first two trimesters were picture perfect and it was by far my easiest pregnancy. 

Until around 26 weeks…

That’s when I started itching. I itched like crazy on the bottom of my feet! I had read that could be a sign of  cholestasis, so I called my Dr. to let him know. He had me come in and have my blood drawn several times over the next week. All tests showed no cholestasis, but I was still itchy. So, because of the itchiness and the fact that I was high risk due to my age, he ordered a growth scan for 30 weeks. 

That’s when they discovered that my fluid level was slightly high. My dr just casually dropped the news into our conversation. He mentioned a few things like fetal abnormalities and gestational diabetes, and risks like cord prolapse, shoulder dystocia (again – I had this with baby #6 and was already super terrified of having it again), and hemorrhaging, but he also acted like it was no big deal at all. He said my poly was mild, at just 26 cm and that it was probably caused by GD because my glucose tolerance test was a little elevated, although not above the cutoff. He said I would be fine, but that I wasn’t going to go past 39 weeks, just in case. 

I left that appointment feeling pretty freaked out. 

My early bloodwork looked fine and my weekly BPPs and NSTs showed that my baby looked great too, other than measuring a few weeks ahead and being breech. I repeated the glucose screening, but never saw the results of it. My doctor said I passed it with “flying colors” though so he referred me to have a consultation with an MFM. 

I met over video conference with the MFM to discuss my case. He ignored the fact that I had passed the glucose screen twice and labeled me with pre-diabetes, then told me to switch to a low-carb diet and said I would be fine. I told him that I had already been eating a low-carb, sugar-free diet for more than a year but still managed to develop poly. But he ignored that completely, said goodbye, and I never saw him again.

Over the next few weeks, I started to swell like crazy. By the end of every day, my legs and feet were double their normal size. I started having trouble breathing. My heartburn felt out of control, and I looked HUGE! My AFI kept increasing every week, and my baby stayed in the breech position for what felt like forever. I remember crying in my Dr.’s office several times because I didn’t think I could make it all the way to 39 weeks. My anxiety went sky high as I got closer to the end.

Then around 34 weeks, my doctor moved away so I got transferred to a new OB that I really didn’t trust. 

My AFI kept creeping up every week until it finally reached 36cm at 36 weeks. I was in full-on panic mode from all of the research I had done. My doctor though just smiled and said, “you’ll be fine kid, we don’t even start to worry about poly until your AFI gets over 100.”  (I didn’t know for sure at the time, but I was pretty confident he was completely crazy to make a statement like that. The most severe case I have ever heard of was in the 70s.) So I left still feeling panicked, and now even more terrified because my doctor wasn’t listening to me or taking my case seriously.

At 37 weeks my baby finally flipped head down and my AFI dropped to 31. I was so excited for that good news! I started practicing some daily techniques to try to keep my little guy from flipping back and hopefully help get him in the best possible position for labor and delivery. When I went in for my 38-week checkup, my baby was still head down, but my AFI was increasing again, almost back to 33 cm. My doctor agreed to induce 3 days later.

The night before my induction, I didn’t sleep a wink because I was so scared that I wouldn’t survive this labor. I wrote tear-filled goodbye letters to my husband and all of my kids. Then spent the rest of the evening visualizing every worst-case scenario. I was such a mess. 

We showed up at the hospital at 5 am, got registered, and all set up for the induction. To my surprise (because my Dr. didn’t tell me), I was group B positive, so they started me on penicillin while we waited for my doctor. He came in around 7 to check my cervix and found that my baby was extremely low and fully engaged (thank you baby positioning techniques!) So he went ahead and did a controlled rupture of membranes right there to start things off. 

I had to stay in bed, on my back for the next two hours while the amniotic fluid drained. I don’t know how much water there was, but they did have to change all of my bedding twice! And I don’t think it ever did stop coming out until my baby was born. Around 11 am, the nurse told me that my doctor had left to go out of town and the new Dr wanted to start me on a low dose of Pitocin. My labor progressed pretty steadily from there. I refused any kind of pain killers because I was terrified to have any more interventions than the Pitocin. My sweet baby boy was born at 1:59 pm weighing 7 pounds, 13 ounces. He was much smaller than we had anticipated! (Especially since my biggest baby was just shy of 10 pounds!)

No cord compression or prolapse. No shoulder dystocia. No hemorrhaging. All of the things I had been so terrified about, I completely avoided. 

Our sweet little boy though was very limp right from the beginning. My husband and I both recall saying that he seemed so “floppy” and how funny it was that his arms and legs just hung at his sides. At one point, when they took him and laid him on the warmer, we were afraid that he had died because he laid so limply. I didn’t know until later that that was the first sign of low muscle tone.

As the day went on, my baby had several episodes of choking/gagging that seemed a little excessive. Around 2 am, his nurse took him for his Hep B shot and a bath but took a very long time to come back. When she finally did come back, she didn’t have my baby.

She told me that he had another choking episode so she tried to intubate him but they weren’t able to get the tube all the way into his stomach. They called back the pediatrician and were waiting for her to arrive and re-assess the situation. When she finally saw him, she made the call to have him transferred to the nearest NICU.

I requested to be discharged and went with him. Over the next few hours, his blood sugar dropped dramatically and his bilirubin started to climb a little high. They were finally able to intubate him though and pumped a ton of fluid out of his stomach. His abdominal x-rays looked good so once they removed the fluid, they focused on regulating his blood sugar. After 36 hours he was stable and doing well, so they let us go home.

2 days earlier, just a few hours after delivery, I started to experience pain in my chest wall, around the back of my rib cage. I mentioned it to my nurses and they insisted I was just sore, so I let it go. Then my mind was completely on my baby for the next several days in the NICU. During that time though, my body swelled up like a balloon. My legs were probably 3 times their normal size. When I got home from the hospital 2 days after delivery, I weighed more than I did when I went in!

For the next few days, I kept feeling worse and worse. I had a horrible headache and a racing heart. Anytime I sat or lay down, I would get really dizzy, my chest got super heavy and it was hard to breathe, and my heart rate would drop down into the 30s. All the while, my chest was still hurting just like it was right after delivery. At 7 days postpartum I finally went into the ER to be checked out. Again, they told me I was just sore from delivery and was probably fine. They checked my d-dimer though just to be sure and it was pretty high. So they did some more blood work and a CT scan of my chest which revealed that I had developed two pulmonary embolisms. That night I got my first of many injections of Lovenox. A week later at my follow-up with the doctor who delivered my baby (Dr. #3), he got about two inches from my face and said, “Tiffany, pregnant and postpartum women die from pulmonary embolism every day. You’re lucky to be alive.”

Meanwhile, my baby was having some complications of his own: low muscle tone, trouble breathing, and a very bloated tummy. His pediatrician sent us in for an abdominal ultrasound where we found that his liver was enlarged. Her immediate thought was glycogen storage disease, so she referred us to a genetic specialist and a gastroenterologist. After a month of testing, though we have ruled out every metabolic disorder that causes hepatomegaly, we’re still at a loss for what caused his liver to be enlarged, or if it will affect him long term or not.

Now at 3 months old, his most recent liver ultrasound showed that it is back within normal limits, Praise Jesus! He is a happy and very big boy weighing over 17 pounds! His geneticist has suggested testing him for Beckwith-Wiedemann’s Spectrum Disease, an overgrowth disorder, just to be cautious. 

So for now, our poly story isn’t quite finished. I am still injecting blood thinners twice a day and will continue to do so until I’ve been on them for 6 months. Then we will follow up, and hopefully, my blood clots will be gone. As for my littlest love, we have more testing and more monitoring ahead of us. The way it looks right now, we may never know what caused my poly. 

Through all of this, I sat helplessly by while dealing with my fear, my family’s fear, and watching hundreds of other mamas in the Facebook support group dealing with similar things. I couldn’t stand the thought of more and more mamas going through what we went through. 

The fear alone is overwhelming. 

That’s why I started the journey of creating a website that led to a nonprofit organization. I wanted to create a place that helps educate people about the dangers of polyhydramnios but also gives mamas a sense of hope and peace. Yes, some of our stories are scarier than others, but we all have the same fears, and we all deserve to have the best care and support.

I’ve shared my story here because I want to help mamas to be their own best advocates. Not all doctors know how to care for mamas with Polyhydramnios. There are currently no universal guidelines for care so I believe doctors aren’t held to a high enough standard and we are the ones who suffer. 

Advocate for yourselves, mamas.

RECOGNIZE THE SIGNS, KNOW THE RISKS, AND RECEIVE BETTER CARE!

Check the updates tab above to read more...

JUL 18

Still waiting for results

Since I posted my story last year we have been through a lot! John Luke was tested for Beckwith Weidemann’s Spectrum Disorder twice and both times the results came back negative. But since the wait for genetic testing is long, we went ahead and started undergoing routine screenings for Beckwith’s. That included regular AFP blood draws as well as routine abdominal ultrasounds. We got good news from the ultrasounds very quickly. After several months, it appeared that his hepatomegaly had spontaneously resolved. However, by this point, we were addressing a different concern because his AFP numbers were increasing which can be an indicator for certain types of cancer. At this point, we landed in front of a Pediatric Oncologist. That was one of the scariest days of my life.

It all turned out alright though, at least alright in the sense that John Luke didn’t have cancer. It just took him a while to get his little body regulated and numbers going in the right direction. As he continued to grow, his geneticist and I both agreed that BWS wasn’t the right fit.  But we were still at a loss for what exactly was going on because John Luke was still experiencing frequent choking episodes and he was falling further and further behind in his motor development skills.

We finally convinced our gastroenterologist to have a swallow study done at 7 months old. The study showed more than 70% penetrations within the first couple of minutes. It was so bad that we had to call off the test so that he didn’t aspirate. The speech therapist asked to watch me nurse him for a few minutes after we concluded the test and she told me that there was no doubt in her mind that he was aspirating based on her observation. So we had to start modifying how we could safely feed him. 

That was an obstacle I wasn’t prepared for. I had nursed my previous 5 babies for 14-16 months each, so learning to pump, thicken, and double heat breastmilk, and learn to bottle feed was impossibly hard on both of us. After about a month, we finally found a formula he would tolerate and were able to transition him to exclusively being formula-fed. Eating solid foods also presented a challenge. He choked with nearly every bite. And the few things that he seemed to tolerate, he didn’t like. He started getting super constipated from the transition to formula and solid food, so we had to use a high fiber supplement along with prunes every single day.

Around 8 months old, our geneticist agreed that we should move forward with whole-exome sequencing. I was having my own thoughts at this point from all of my research that John Luke could possibly be dealing with a mild myopathy and our geneticist agreed. We sent off the tests in April. Then our geneticist referred us to ECI (Early Childhood Intervention) to help assess how far behind developmentally John Luke was. I had asked our pediatrician for this referral at four and at six months old and she refused to assess until nine months. When we went in for our nine-month check-up, her response was, “Oh my goodness, he’s completely in the black!” I’m still not sure what that means, but it can’t be good.

We finally got in to see the occupational therapist at 10 months old and I can not BELIEVE the difference it has made! My baby has gone from not sitting up and only rolling in one direction to nearly walking in just two short months now. The thing that really makes me frustrated though, is that our OT informed me that in the US, early childhood intervention is a government-funded program available for free or very low cost to every single person in our country without a doctor’s referral! It makes me so angry that I went through so many doctors, specialists, and other healthcare workers for months and no one ever mentioned that to me. I can only imagine how much better off John Luke would be right now had we been able to begin those therapies sooner!

Anyway, June rolled around and I was anticipating the results of our whole exome sequencing pretty soon. I got the call about a week before I was expecting it from our geneticist. Unfortunately, that call was to inform me that apparently, the lab had never received our DNA test kits. I was devastated. We had been waiting 3 months only to find out that we were going to have to start all over again. So, here we are, more than a year after John Luke was born, still without answers, and still trying to find the best coping mechanisms. 

Thankfully now though, if this year has taught me anything, it’s how to be a great advocate, and also that seeking correct treatment even before a diagnosis can be found is so helpful. I’ve learned that for so many disorders affecting our poly babies, the therapies are the same. And speaking of therapies, they make all the difference! I couldn’t even begin to imagine where we would be without Alyssa, our wonderfully caring occupational therapist.

DEC 16

We have answers!

John Luke is 17 months old now. We got the results from his whole exome sequencing a couple of months ago and John Luke and I both have a very rare chromosome deletion called 16p13.11 microdeletion. It’s extremely rare so not a lot is known about it yet, but it has been linked to low muscle tone, feeding problems, enlarged liver and spleen, microcephaly, heart problems, seizures, schitzophrenia, autism, and several connective tissue disorders, one of which is known to cause blindness. As you can imagine, our rounds with multiple specialists have only increased! The diagnosis was scary, but it didn’t change what we were already dealing with, only gave us answers. And it is really good to finally have answers. 

John Luke has been thriving with therapy though. We ended up adding speech and feeding therapy and a few consults with physical therapy. He has done so well that he was actually discharged from occupational therapy today! We are still continuing with speech and feeding therapy though.

As for the rest, we are managing things one day at a time. It’s a lot to take in. Especially now that we know the genetic condition was inherited from me. Suddenly many things that I have dealt with, and things we’ve seen in some of our other children are making sense. We have a long road ahead of us, but we are at least heading in the right direction.

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