For the quick version for those who have kept up with the other blogs about Rebekah–she is getting her thyroid levels rechecked again on Monday, June 6; she will be 16 weeks. She has an appointment to see a pediatric endocrinologist on Thursday, June 30 in Little Rock.  She currently weighs 10lbs 10oz, catching up.

I finally felt like fleshing out more details regarding our experience with the pediatrician and his nurse  (who turned us in to DHS for neglect). So here goes…

My personality pisses off the most annoying people. And that is okay. I’m getting used to it. I can be super laidback, warm, compassionate, flexible…so easy to get along with.  Or…based on how you approach me, I can be all facts and a stone cold statue.

I give people lots of chances, and I’m incredibly forgiving, not forgetful…but forgiving. I will remember what happened, and I might keep you at arm’s length, but if you want to be back on good terms with me–okay, that can definitely happen. And if you want to battle…okay. I’m probably already dressed in my suit of armor with you.

I have an incredibly good memory–my blessing, my curse. And I keep damn good records of anything controversial that goes down. If you are in a position of potentially having a dramatic effect on my life or my family’s lives, and you choose to threaten me, promise me something, lie to me, change your facts…it’s documented. I promise you. 

As Rebekah’s parents, we disagreed with and hesitated with our first pediatrician and his nurse. I found them to be decent people at first…and still think they are, but the nurse became aggressive and condescending and even angry…with no REAL facts to bolster her aggression. She reported us to DHS for neglect because we went against their medical advice. 

The DHS ladies who came to my house were kind, diplomatic, and listened to me

My letter to the DHS investigator…

 

M—-, (DHS investigator)

I looked through my calls and voicemails, and updated the info I had emailed you with more accurate details. Please call or email me if anything is unclear.

When we go see Dr. Fife on Monday, May 16, I will put you on his list of people who are allowed to access her medical records and tests. Is that all you need me to do?

I’d prefer not to go by Dr. Dilk’s office to do this, unless absolutely necessary. Fife’s office told me that Dilk would transfer all her records to them.

Let me know.

Emily

And I included all of my notes about Rebekah in the email…

Rebekah was born on February 15, 2016. My 5th daughter with a midwife, my 4th water birth. At 5lbs 10oz, she was my easiest delivery by far. Her cord was attached abnormally, so she had IUGR (Intrauterine Growth Restriction…this is why she was small). We didn’t know this until she was born, and she was born at 39wks and 6days, only one day early. No delivery complications, in fact, I delivered her quickly once I got in the water, and I bled very little. 

In any following bold notes, MW is midwife appointment; Pedi is pediatrician appointment; BM means breastmilk; GM is Meyenberg powdered goat milk (recommended by Dr. Sears as a supplement).

Birth      5am  2-15-16    5lbs 10oz MW  BM only

1 week  12pm 2-22-16   5lbs 11oz Pedi  BM only

On February 22, Dr. Dilk was not in the office and available for our 10:30am appt because he had to go to Mercy. However, we weren’t told this until around 11:30am after waiting an hour already.

We were told we could continue to wait or reschedule. We chose to wait…because they had been adamant that they would like to see Rebekah within one week, and this was a Monday and she was one week exactly. 

Plus, we were already there, and my husband was off work and helping with my toddler and newborn. So we waited and I nursed Rebekah a lot extra while waiting. Consequently, she weighed one ounce over birthweight at this first appt after 2 hours of nursing.

Rebekah did the PKU and bilirubin tests on 2-22.

We consented to both tests. We were told it would be a heel stick only. Nurse Benedict attempted and failed to find a vein in Rebekah’s hand after bending Rebekah’s wrist in half and stabbing 4-5 times unsuccessfully. Then they finally did the heel stick they had said they were only going to do.

Bilirubin was borderline; it was 20.9 which is just below the level when they recommend light therapy. 

Nurse Benedict wanted to schedule an appt to have her level checked again the next day to see if it was going up or down. They had told me, and I had read, that bilirubin usually peaks at 5-7 days. This was day 7. 

All of my other 4 daughters had had some jaundice , and I didn’t feel that another check was warranted. Rebekah is also seen and checked by my midwife regularly. She had a few factors that possibly made her more jaundiced as well–lower birthweight, breastfed, and I have my midwife wait until the umbilical cord finishes pulsing before cutting (more blood means more dead RBC). 

“There is growing evidence from a number of studies that all infants, those born at term and those born early, benefit from receiving extra blood from the placenta at birth,” said Dr. Heike Rabe, a neonatologist at Brighton & Sussex Medical School in the United Kingdom.

And another quote from that same NPR article about delayed cord clamping“Some studies have found a higher risk of jaundice, a buildup of bilirubin in the blood from the breakdown of red blood cells. Jaundice is treated with blue light therapy and rarely has serious complications.”

There are jaundice cases that are abnormal and are a cause for alarm, and there are expected and normal cases…such as Rebekah’s. 

I told the nurse that Rebekah could be checked again at her 2-week appt if she still looked jaundiced to the doctor.

Nurse Benedict pretty much insisted that she make us an appt for 8:30am the next day. I told her AS she made it–there’s no way I’m coming at that time. I take my older 3 daughters to school, and then in addition, I would have to bend over backwards to get my 2 year old and newborn bathed and ready to be seen that early.

Nurse Benedict told me that I could cancel the appt if I realized I couldn’t make it. So…the next morning I called and cancelled it. And then made her 2 week appt. I’m not sure if Benedict was willfully setting me up to look as though I missed appointments left and right…or what here. 

Side notes–(In the DHS report, they alleged that I was a “no show” at two appts that I rescheduled, one appt that I cancelled, another appt that I never made–nor was I consulted that it was made for me, and a final appt that my husband cancelled when we finally chose to switch doctors).

I received a call on Feb 25 and 26. I returned the call on the 26th but no one answered. So I just planned to see them on March 1 at my appt. 

Screenshots of calls are at the bottom, in reverse date order. If the call is 479-314-4940, then it was an outgoing call from me. It the call is 479-259-9400, then it is incoming. 

There are also a few Little Rock calls on the list–to and from the newborn screening nurse, and to and from AR Children’s Hospital. I erased all other calls that were between my pediatrician calls, but as you can imagine with 5 busy daughters (14, 12, 11, 2, and newborn)…my calls with the pediatrician are not my only calls, nor my only daily time commitment.

Her two week appt…

2wk 1d   8am   3-1-16      5lbs 10oz Pedi BM only

Rebekah had had a runny nose and had slept a lot extra and not nursed as much this week. Plus, this appt was 8:30am, and she hadn’t nursed much before she was weighed (unlike the 12:30pm appt where she nursed 2 hours). 

The doctor was concerned about her “weight loss” of one ounce. I believed she had a fully belly at 12:30pm when weighed the week before, and an empty one at 8:30am on this day. Plus she was back to birthweight exactly…even with this slight fluctuation and 1oz weight loss. Baby should regain birth weight by 10 days to 2 weeks.

(I made a mental note to be sure she nursed very regularly between this day and her next appt. And 15 days later, she had gained 15oz.)

Side note–DHS report says they were concerned about Rebekah’s weight loss.  She lost one ounce, and was at birthweight. By the next appt, 15 days later…she had gained 15 ounces.  

She has never weighed below birthweight–not at the doctor’s office, with my midwife, or at home on the borrowed scale. 

This is neglect? I have heard of so many newborn babies being so much smaller than she was and/or losing so much more weight. 

Dr. Dilk acted irritated that there was some “misunderstanding” and that I didn’t come back a second time the week before to have her bilirubin checked. I told him I didn’t believe there was a misunderstanding. I had cancelled the appt because I believed she was fine based on the test that showed…she was fine (below the level needing light therapy).

He said she still looked very jaundiced to him, and he wanted to check again. My husband consented, but requested the heel stick only…instead of the excessive unsuccessful jabbing and then the stick.  Rebekah’s bilirubin was 11.4.

Dr. Dilk didn’t make any comment to me about this level, in fact his nurse was the one who called and told me the result. At her next appt (2 weeks later), he mentioned that her color looked fine. He didn’t ask to retest bilirubin again at 4 weeks. 

Side note–The DHS report stated she had “severe jaundice” and “prolonged jaundice.” Her bilirubin never reached the level where they even recommend light therapy; her eyes were never yellow. But it was considered severe?Okay. 

She was also regularly seen by my midwife who has been a nurse, midwife, and/or EMT for decades.

I did feel that “severe” and “prolonged” were not accurate adjectives, but okay. We consented to having her blood drawn and tested twice to check bilirubin levels, and both times it was below the level requiring light therapy. This was neglect? How?

Persistent jaundice in the neonate is defined as jaundice that lasts longer than 14 to 21 days “

Breast milk jaundice is a type of neonatal jaundice associated with breastfeeding. It is characterized by indirect hyperbilirubinemia in a breastfed newborn that develops after the first 4-7 days of life, persists longer than physiologic jaundice…”

March 10–I missed a call from pedi at 10:30am. Benedict left a vague message–they “wanted to talk to me about some of Rebekah’s results, and to talk about a followup.” I still have this voice message. I planned to call back the next morning. Her message basically sounded like they were scheduling the next appt, didn’t sound urgent whatsoever. 

March 10 was my 5th grader’s birthday and also my two oldest daughters were trying out for cheerleading that day. I received and missed another call from Benedict at 2:40pm, assumed it was again about rescheduling…no voicemail, and planned to call the next day when my schedule was less hectic.

I missed several other calls that day (not just pedi calls, I deleted the other calls from my call log to take a screenshot of all our conversations and contact with their office). I missed so many calls that day as I was busy with a  birthday and cheer-tryouts (and with my toddler and newborn). One call I missed was from Nurse Brown who was with AR newborn screening. 

I didn’t recognize the phone number and didn’t answer. I thought the voicemail might be another spam call telling me I won a cruise, so I didn’t even listen to it until I wasn’t busy, which was about 10pm that night. (My older daughters had both made cheer, and we had been at a dinner and meeting until late that night.)

The message from LR newborn screening said Rebekah had an abnormal result on her PKU test, message was on 3-10-16.

I called LR first thing on 3-11-16, spoke to Nurse Brown for 20 minutes. She told me that Rebekah’s thyroid test had an abnormal result. We weren’t told the TSH or T4 levels. But I will say Nurse Brown was incredibly kind and helpful. 

She also told me that my pediatrician “turned this issue over to her” because they said they were unable to reach me, and they made it sound like I never communicated with them, which I have several incoming and outgoing calls of varying lengths to disprove this. Nurse Brown even said, “You’ve talked to them and been to appts that many times? Now I wonder why they made it seem like they never spoke to you…”

Nurse Brown said that often the PKU tests result in a false positive, and that I just needed to have her thyroid rechecked. I had an appt with my midwife on 3-14, and I rescheduled with Dr. Dilk for 3-16 to get her levels retested.

4wk      10am   3-14-16     6lbs 3oz MW   BM only
4wk 2d  11am   3-16-16   6lbs 9oz Pedi  BM/GM

Rebekah has a different thyroid test on 3-16-16. I received a phone call from Nurse Benedict on 3-18-16. I was told by the nurse (not the doctor) over the phone that Rebekah’s results were consistent with congenital hypothyroidism (which wasn’t even true. CH would be low T4 and elevated TSH. Her T4 was in normal range, but I didn’t know the “nurses’s diagnosis” wasn’t accurate until I got Rebekah’s paperwork. Why would we give her a prescription for fake T4…when her T4 was IN NORMAL RANGE? This makes sense?).

Individuals with CH are unable to make enough of a thyroid hormone, so a low level of thyroid hormone in the blood may indicate that your baby has CH…”

I wrote down some and memorized some of the information she told me. I asked to have Rebekah’s medical records and labs mailed to me. Benedict said I would have to sign a medical release. I had already signed one, but okay. The day I went to pick up her records in person, the receptionist didn’t even ask for my ID. 

Nurse Benedict stressed over and over that Rebekah would have brain damage if she didn’t start taking Synthroid immediately. No actual scientific proof or evidence of this scary threat/claim was offered WHATSOEVER. 

From my own research, I found cases of untreated SEVERE congenital hypothyroidism leading to brain damage, but never mild untreated cases. (Which…if her T4 was IN RANGE, they shouldn’t have even said her results were “consistent with congenital hypothyroidism” anyway.  A topic for another blog.)

In fact, I found instead…articles where endocrinologists DISAGREE about whether mild cases should even be treated, especially in babies who have low birthweight. 

“Further trials are needed to determine the thyroid hormone profile in both preterm and full-term SGA newborns and also to evaluate the effectiveness and safety of LT4 treatment in these infants.” (More links in other blog called Rebekah Update).

So I have a nurse tell me a wrong diagnosis over the phone, and she tells me I need to start giving my baby this fake hormone daily…or she will develop brain damage. I then find lots of scholarly articles (written by specialists) and studies that warn about the controversy in treating SGA (small for gestational age) babies with LT4 (levothyroxine/synthroid), so I am hesitant…and I want more information before starting the drug.  So is this the part of my behavior that proves I’m a neglectful parent? Because I read?

But Synthroid MIGHT bring Rebekah’s TSH into range. Is that enough of a benefit to start it? As her parents, we had to weigh out that decision. Does synthroid always bring numbers into range and keep them there? Does putting a baby on synthroid guarantee a life free of worries, as many people have suggested to me?

I also read so many parent forums where babies ON SYNTHROID continued having crazy test results–super low TSH and super high fT4…both levels insanely out of normal ranges. Such as this…

Dr. Dilk never spoke to us after these thyroid test results, not even on the phone. I do feel that all of this was VERY MISHANDLED. 

Rebekah was never examined for any symptoms of this disorder, nor were we asked if she had any of the symptoms. Almost as if Nurse Benedict were reading a script, we were told–START THAT MED, or she will develop BRAIN DAMAGE. Who wrote her this script to read?

We were told that we would be referred to a pediatric endocrinologist in LR. We were told over the phone to go pick up a prescription for Synthroid. We were not informed of any risks of their suggestion OR of any other options (Armour thyroid, foods or supplements that enhance a thyroid’s natural functioning). We were not informed of something called transient congenital hypothyroidism.

I had so many questions. So I did my own research about all of this, and we chose not to pick up the prescription or give it to her at that time. Different information or different test results could change our minds, but so far I haven’t seen it. 

We had started supplementing with goat milk on March 14, even though I wanted to breastfeed only, as I had only breastfed my other 4 girls. I didn’t want Rebekah to get frustrated at the breast or nipple confused. However we started supplementing to help her catch up on her weight quicker. Appointment with midwife on March 21.

5 wks    10am   3-21-16   6lbs 15oz MW  BM/GM

I had tried to call AR children’s myself on March 18 to schedule an appt (see call log), but I was told they had to receive the referral from my PCP first. I told the woman that we were researching Synthroid and unsure we were going to put her on that. The woman at childrens told me we would have to follow our PCP’s recommendations until we were contacted to set up an appt. 

We had to give her fake T4 when her T4 level was in normal range? Why? So I read more. 

I received a vague message from Childrens on April 13 (still have this) saying Rebekah had a 1pm appt…but the date wasn’t even stated on the message, and no one had spoken to us from my pediatrician’s office or from Childrens. I had not been contacted by anyone to schedule this appt, told it was going to be made…nothing. No further communication from our pediatrician whatsoever. 

I called AR childrens back on April 13 and found out that an appt had been set for us for the next day (??). The woman at childrens said they spoke to someone at my pediatricians office. But we weren’t called. 

We were both working on the next day, and couldn’t possibly get our shifts covered with half a day’s notice. I also had no childcare in place for my toddler so she wouldn’t have to travel 5-6hrs. 

So I cancelled it and got their contact information. I told them we will call back to reschedule if and when we decide to have her thyroid scanned.

Keith and I discussed this issue at length, and we had decided we would have her checked out at a later date or if we noticed any alarming changes in health, happiness, or behavior.

She was gaining. She was happy. She was hitting milestones. She follows objects with her eyes, smiles at us all the time, coos at us, eats and sleeps and poops and pees regularly. 

What were they wanting to change or fix or improve? Her TSH only? I had read plenty on to be convinced there was no guarantee that Synthroid would “solve” TSH levels. 

She had IUGR and was subsequently fairly small, and yes…she was still little, but gaining and happy. I will say that her “holding up her head strength” probably needed improvement. For a while, her head and belly were big compared to her little limbs (which seems consistent with other IUGR babies’ photos I had seen).



Rebekah at 14.5 weeks

We supplemented with goat milk a while; I went back to strictly breastfeeding a while. We borrowed an electronic scale from my midwife. And we weighed Rebekah at 8-9pm every night, and kept track of her progress.

So, we assumed that was that. We would have her rechecked some time later or if we noticed changes that were unusual. So a week passes. 

On April 21, I received a call from Nurse Benedict from Dilk’s office, and she is sputtering like an angry auctioneer, stating I had missed my appt with Childrens. I asked her–who made that appt? No one had spoken to me regarding availability or ANYthing, and I couldn’t make it with a half-day notice. 

She mumbled something about how she thinks she might have asked Childrens to work me in last minute. But again…no communication with me if I was free to come there the NEXT day. 

She asked me if Rebekah had been taking the Synthroid. And I said no. She flipped out and started talking over me and throwing around the words “brain damage” again. I had to cut her off to squeeze in my words–I wasn’t thrilled with the list of Synthroid side effects; I wasn’t necessarily thinking a radioactive isotope scan was necessary; I wasn’t alarmed by Rebekah’s behavior or progress hitting milestones. (And at this point I didn’t even know that I was given wrong information on the phone…her T4 was in range all along, and this nurse was prepared to shove fake T4 down Rebekah’s 2 month throat herself.)

She insisted that I come to see Dr Dilk ASAP since I hadn’t done his/their other recommendations. I wanted to schedule for a mon, tues, or wed…because that’s when Keith is off and could come too. I told her I could come Monday May 2, so we made an appt.

I switched to pumping to feed her the breast milk on Tuesday, April 26. Then the next day (Wed Apr 27), we started supplementing with goats milk again (since she was doing breast milk from the bottle anyway).

When Keith saw on the calendar that I had scheduled for May 2, he asked me why I chosen that date because he had work obligations that week. I told him there was no way I was calling to reschedule it based on how I had been treated. So he called to reschedule for the following Monday, May 9.

Nurse Benedict got irate with him (according to Keith; I didn’t actually hear the conversation), and she threatened that “something was going to have to be done” about us. He asked what that meant. And she said–well, this is all a form of neglect. She went ahead and rescheduled for May 9 (Rebekah would be 12 weeks exactly on that day).

Frankly, we didn’t appreciate or even understand the nurse’s hostility and threats toward us. Why? I still don’t understand. 

Their recommendations based on test results were not personal attacks against us or our daughter. I never took the recommendations as attacks. 

Likewise, our decisions were not personal attacks toward them. We took the information they gave us (albeit some wrong information), we did our own research, we looked for actual facts and studies and evidence, we weighed out risks and benefits. We made our choices. 

Did she take our choices personally? That is what I think. 

Keith and I discussed everything. And we decided to ask around for a recommendation for a new pediatrician. I scheduled ASAP with Dr. Fife. The earliest he had was 11am on Monday, May 16.

I told Keith that he needed to call to cancel with Dilk, and he did this on Friday May 6 (see call detail). He told the receptionist we were scheduled with Fife for a second opinion on Mon, May 16. And if Dr. Dilk himself wanted to speak to him, he could call him back.

We received no further communication from Dilk office. However, according to the DHS report, they apparently left our Monday appt in the system instead of cancelling it…to make it look like we were neglectful no-show parents…again.

DHS investigators arrived on Wed May 11 to read allegations that Rebekah was being neglected. 

Allegedly, she had weight loss that concerned them (an ounce…which brought her down to birthweight at 2 weeks old) and gaining problems (?), she had severe jaundice (which was below the level requiring light therapy…and which was significantly lower when checked a week later), she had prolonged jaundice (why did he not ask to measure bilirubin at 4 weeks then?). Also…we were allegedly “ignoring” her care and diagnosis. Um, no…we just needed some time and space and more information…ESPECIALLY factual and correct information. 

Rebekah is our concern. Rebekah. Not being bullied with incorrect diagnoses and unsubstantiated threats. Rebekah. 

Rebekah’s TSH was 8.18 (also in range now, on some charts at children’s hospitals) on May 16. We are still going to have her levels rechecked a 3rd time on June 6. Of course, we hope that both levels are still in range. Of course we hope that. 

On Monday, May 16…

Her fT4 was 1.13

Her TSH was 8.18

We have an appt with a pediatric endocrinologist for a consultation on June 30. (I have been compiling a list of questions. Pray for Rebekah. Pray for us. Pray for him.)

I’ll update soon about how the new pediatrician appt went.  Not now. This entry is long enough already. 

Just…DOCUMENT everything, especially if you are unconventional. Journal all details. Write it down. And expect to be attacked. 

People wear me out. This sequence of events is to be considered “care” and “therapeutic”?

Call logs in reverse order, starting with soonest calls…

From Keith’s phone…
Version 2

Version 2

IMG_4596

IMG_4592IMG_4590IMG_4589

 

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5 thoughts on “Congenital Hypothyroidism: Burn down the disco

  1. This type of thing is happening more and more in our country. It could happen to anyone. Our medical system is broken and needs fixing but it probably won’t get fixed. Why do they think that they are gods? This turning over to dhs has become quite the habit for them too. They can’t handle anyone questioning them. What egos!

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