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Truncus Arteriosus

jadweddjadwedd member
in Pregnant after IF
I went to the fetal heart dr today and the baby has truncus arteriosus.  I have to go tot he Children's Hospital of Philadelphia for the delivery and she will need surgery about a week after she is born.  Her heart did not form properly.  He said that this could be a sign that there are more problems too that they cannot see until she is born.  So she will definately need open heart surgery when she is first born and then several surgeries through her life to keep up with it.  The dr said that there is a 90% success rate with surgery if it is done early enough.  I am just numb right now and need lots of prayers.  I am praying that the dr. is wrong, but he seemed pretty sure of himself when I asked him if there was anyway he could be wrong.  She is also measuring too small so I have to try to fatten her up still.
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Re: Truncus Arteriosus

  • luvbostonluvboston member
    Hugs. Sending t and ps! Can you get a second opinion?
    6 m/c
    Anovulatory cycles, increased Synthroid Diagnosed Sep 2010
    Natural cycle Dec 2010 BFP M/C 6 1/2 Weeks, D&E Jan 2011
    1 Clomid/Ovidrel BFN May 2011
    Natural cycle Aug 2011 BFP M/C 4 Weeks
    1 IUI Sept 2011 BFP M/c 7 weeks
    Provera Dec 2011 BFP M/C 3 Weeks
    DQ ALPHA HLA MATCH, High NK Cells Diagnosed Dec 2011
    IVF March 2012 BFP m/c 4weeks 5 days (IL, Prednisone)
    IVF#2w/DS July 2012 MEGA FAILURE BFN (IL, Dexamethasone)
    Diagnosed No real HLA Match, DQ Beta Triad, High TNF, Low NK Cells
    Oct 2012 Natural Cycle m/c 4wks (Lovenox, Prednisone) 
    Went to Beer Center- high tnf, low lad, implantation failure
    Nov/Dec 2012 LIT Treatment
    Dec 12 Humira
    Jan 2013 BFP
    Humira,LIT,Prednisone, Lovenox, IVIG, Baby Aspirin
    Miracle Born August 2013 Premature

    Yours doesn't have to be a sad story


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  • jadweddjadwedd member
    Yes, I will get an entire team at the hospital that I will meet with hopefully next week and they will run more tests and evaluate what the first dr found.  But the obgyn agreed with the cardiologist that this is the problem. 
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  • golfrgalgolfrgal member
    I'm so sorry you have this extra worry to contend with.  FWIW, CHOP seems to have fabulous teams who do terrific things for newborns, so at least you can feel secure that you and YD will be in good hands.
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  • oO Angie OooO Angie Oo member
    Sending lots of prayers for you and the baby!! I can't even imagine what you're going through. God is good and He is the great physician!! Praying this doctor is wrong but if he's right we all need to be praying for him too if he's the one to operate on her when she's here. 
    Me: 29 DH: 32 Married: 10.25.07 Been dealing with amenorrheoa since I was young. (Literally go years w/o AF) Unexpected and very surprising BFP in Feb 2007. M/C April 2007. :( TTC since 2008 Metformin- Didn't help. :( Clomid 50mg/Provera cycle #1 7/2009 - BFN Clomid 50mg/Provera cycle #2- 8/2009- BFN Clomid 100mg/Provera cycle #3- 1/2010- BFN ...Took a break... 2012- Met with RE 09/12- Day 3 Labs- FSH 2.5, Estradiol 47, TSH 4.5 (Doc re-ordering Day 3 labs) DH sperm analysis- all good 11/12- Day 3 Labs- FSH 4.3, estradiol 38, TSH 2.51 Prescribed Synthroid 11/12- HSG all clear 1/13- IUI with Femara and trigger shot on 1/31- BFN 2/13-IUI #2- cancelled due to low response 3/13- planning IUI with injectables
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  • mlampingmlamping member

    I am sorry you are going thru this. My dd has a heart issue too and they told us she will need a surgery too, but when she was born it was not that bad and no surgeries yet. She is monitored with ultrasounds and echo thing every 6 months. 

    So maybe it wont be that bad. In any case best of luck and sending you t&P and hugs.  

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  • jezebel57jezebel57 member
    Oh wow. I am so sorry that was thrown at you. I can't imagine how you are feeling. I am about an hour away from CHOP and I have to say that their cardiac unit is absolutely amazing. Top place to be to take care of your baby girl. Sending prayers your way.
    Me (37) DH (39); PCOS changed to Unexplained, changed to DOR in 2012 (finally a correct diagnosis!); 
    Started TTC 2009 with RE after 6 months.  
    Clomid + Trigger x2; 
    IUI + Femara x1,
    IUI + Follistim x2;
    IVF #1 (MDL) February 2013- BFN.
    IVF #2 (antagonist) May 2013, First BFP of my life. 
    Identical twin miracle BOYS (!!) headed our way- due date is technically 2/4/14 but c section is scheduled for 1/7! 


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  • JewelsW1980JewelsW1980 member

    Lifting you, baby girl and your team of doctors in prayer.  God is good and He will take care of you and your family.  We're here to lean on!! Hugs to you!

    Me- 32, DH- 32- TTC for 4 Years
    IUIs 1-6 BFN
    IVF #1= BFP- M/C
    FET- Beta#1: 69, #2: 482, #3: 1088, #4: 28,318, Ultrasound- 1 beautiful heartbeat
    It's a boy!

     BabyFruit Ticker

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  • Julie21613Julie21613 member
    Oh... I am so so sorry to hear this....I will keep you and your sweet little girl in my prayers.  I hope you can take some comfort in the fact that she will be in the best possible hands.  God gave this cardiologist a great gift and will guide him through your LO's surgery.
    Me 35, DH 36
    TTC summer 2008
    Diagnose me. DOR, DH perfect
    IUI # 1 6/2010, BFN
    IUI # 2 8/2010, BFN
    IVF # 1 10/2010 Canceled poor response
    IVF 1.2 12/2010 BFP! mc 6 weeks 2 days
    Mental health break for 10 months
    IVF # 2 10/2011 BFN
    IVF # 3 5/2012 BFP! 10 eggs retrieved (best ever)
    7 fertilized transferred 3
    Beta #1 14dpo - 72, Beta #2 17dpo 145 Beta 3 20dpo 521
    First u/s June 15 saw HB 126 bpm missed m/c 7/5/12 10 weeks D&C 7/6/12
    IVF#4 ER 9/30 ET 10/3 Beta 10/16 BFFN. IVF #5 final with o/e. ER 1/21 only 1 retrieved, hoping my lonestar is the one. Beta #1 2/6/13 = 209.... please let this be it! Keep growing lonestar! Beta #2 2/8/13 - 586! , Beta #3 2/10/13 = 1898. First u/s perfect little heart beat at 116 bpm. Measure 6 weeks 1 day. EDD 10/14/13
    3/4/13 measuring right on track beautiful heartbeat 171 bpm, graduated from RE to OB... bittersweet.
    PAIF/SAIF always welcome! Its a girl! 

    Maggie Grace is here!  10/5/13... 8lbs 6 ounces of pure joy!

    TTC#2  No birth control since DD was born.  Getting ready to jump back in the saddle.  Weaning this month. RE
    appt scheduled 5/8.   Here we go again!

    IFV# 6.  10/27  6 retrieved 4 mature 3 fertilized.  2 made it to 3dt 10/30. 1"very pretty 8 cell" and 1 6 cell.  Beta
    11/13.   Please stick embies!!!!  We love you so much already! 11/12/14  POAS, BFP... beta tomorrow!
    11/13 beta #1  924!!!  2nd bet 11/15 1906, one more on 11/17 3rd & final beta 3430.  First u/s 12/5, 7w4d, 2 heartbeats,
    both measuring right on track....2nd u/s... all is well... both beans measuring right on track... released from RE... first
    appointment with MFM 1/5.  Looks like this is really happening!

    image




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  • BootsOrHeartsBootsOrHearts member
    I'm so sorry! I hope the surgeries go ok and that she is otherwise a happy and healthy baby!
    **Warning: Losses and living child mentioned**
    BFP#1 1/31/12, EDD 10/6/12 Harrison Gray born sleeping @ 18w6d. You changed our lives little guy.
    BFP#2 EDD 10/29/13, C/P 2/25/13, Bye little Ish, we barely got to know you.
    BFP#3 EDD 12/21/13, Baby Boots born 11/23/13 My rainbow baby!
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    January PAL Siggy Challenge: Good Advice
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  • PurplePanda2PurplePanda2 member
    Sending big prayers your way.  I hope that if this diagnosis is correct that there are no other problems with your girl.  (((hugs)))
    imageimage



    TTC #1** Went off BCP July 2011

    Me: 31 DH:31


    Jan 2012 Dx PCOS by OB/Gyn


    July 2012 - Tests with RE confirmed PCOS and annovulation

    2 rounds of clomid, 5 IUI's using clomid + injectibles. 

    Surprise BFP while on break cycle due to cysts.  It's a girl! Baby "E" born on Thanksgiving Day 11/28/13


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  • amb2013amb2013 member
    Im so sorry you are going through this. i followed your progress and You have had a fighter in there since day 1! You are in excellent hands with CHOP. Hoping and praying for you!
    image

    Me:34 PCOS, one kinked tube, low thyroid.
    DH:39 lower than average count.
    Married 2006. 3 failed IUIs and countless BFNs.
    ~IVF#1: July 2012~
    7/10 Retrieval: 16r, 14f w/ICSI. 7/15 ET: Transfered 2. 4 frosties.< Poas faint+ 4dp5dt.>
    Beta#1 (8dp5dt): 138. Beta#2 (10dp5dt): 355.
    u/s#1: (19dp5dt) 8/3/12 one sac, two yolks! Beta 8,000
    u/s#2: two strong heartbeats! EDD 4/2/12
    Boy/girl fraternal mono/di twins-- lost our sweet baby girl at 22 weeks due to SIUGR
    Preterm labor at 23 weeks 4 days, lost our sweet baby boy.
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  • DahliaFlowerDahliaFlower member

    I'm very sorry to hear this news.  I am thinking of you and your baby.  CHOP has the reputation for being an excellent facility and the silver lining is that you were able to learn of this diagnosis before she is born, so you and the doctors can prepare for what needs to be done.  Unfortunately, some babies are not diagnosed in a timely fashion and they may suffer or have poor outcomes because of the delay.  

    You will find that the Congenital Heart Community is very supportive and resourceful.  Please PM me if you would like me to suggest to online resources, FB groups, etc.

     

    TTC #1 12/2009
    BFP #1 1/2010, M/C 6 weeks
    BFP #2 6/2010, DD lost to     congenital heart disease, we are heartbroken.

    TTC #2 4/2011, diagnosed MTHFR, FVL
    Four natural cycles BFN; Clomid IUI BFN; Follistim IUI BFN;
    1/2012 IVF #1 BFN
    4/2012 FET BFP #3
    5/2012 7w1d u/s: anembryonic demise; M/C @ 8w.
    6/2012 found Stage II/III endo on laparoscopy, removed w/ laser.
    8/2012 IVF #2 epic fail: no viable embryos.

    Vacation, break, second opinions, on to new RE.
    1/2013 Surprise chemical pregnancy BFP #4 (break cycle), IVF #3 postponed.
    2/2013 TI w/ hormonal support, prednisone, aspirin, Lovenox, acupuncture gave us a miracle BFP #5!
    Heartbeat on U/S at 6w1d!     Baby,please stay!!
    Our miracle baby boy arrived 10/2013!  We are so in love!!

    10/2014 Surprise BFP #6
    Our second daughter arrived in May 2015!  We are so grateful!  

    Lilypie Angel and Memorial tickers


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  • melkel559melkel559 member
    I am so sorry...I am keeping you and your LO in my thoughts and prayers. I have heard nothing but wonderful things about CHOP and I hope they take good care of you and provide you with the answers you need. HUGE hugs.
    TTC since June 2011
    DX: DH (30) severe MFI, severely low count & low motility
    Me (32): all clear
    Appt with Urologist 5/21/12: exam, ultrasound, bloodwork all normal.
    Testicular Biopsy with TESE on 6/8/12. good sperm found! (left side only) froze sperm, failed thaw test :(
    Orientation for IVF/ICSI on 6/13/12. Waiting for the green light following biopsy results...results show adequate sperm production both sides.
    2nd SA 6/18/12: sample is "adequate for ICSI"
    Plan: IVF/ICSI July 2012!
    ER: 7/26/12. 15 eggs retrieved, all mature.
    TESE/TESA/aspiration from epididymis, no motile sperm found :(
    froze all eggs, the saga of praying for good sperm continues.
    8/3/12: 2nd opinion from MFI uro on biopsy slides. Suspects "partial late maturation arrest."
    Plan: more SAs, third biopsy/TESE with frozen back-up either from DH or DS.
    SA 8/17/12: Zero sperm
    SA 8/23/12: Zero sperm
    9/26/12: SPERM FOUND! 15 eggs thawed, 12 survived and were ICSI'd, only 3 fertilized normally. Refrozen as embies and will thaw in Nov. Please survive and grow!
    All 3 survived the thaw on 11/15/12!
    FET 11/17/12: transferred 2, one 4B, one 4C. Beta 11/30:BFFN
    moving on to DS
    DIUI#1 2/18/13,50mg Clomid cd 3-7, Ovidrel trigger, Beta 3/4/13: BFN.
    DIUI#2 3/19/13, 50 mg Clomid cd 3-7, Ovidrel trigger, Beta #1 (14dpiui) 4/2/13: BFP!!!! 150. Beta #2 4/4/13: 420 Beta #3 4/8/13: 2691. Beta #4 4/15/13: 15,086
    1st u/s 4/8/13 shows one gestational sac
    2nd u/s 4/15/13 shows yolk sac, fetal pole and early heartbeat
    3rd u/s 4/25/13: measuring right on track. Heart rate 148 bpm
    A/S 7/22/13: IT'S A BOY!!
    PAIF/SAIF Always Welcome
    [IMG]http://i49.tinypic.com/2qmon5u.jpg[/IMG] [IMG]http://i225.photobucket.com/albums/dd243/laurakat24/turkeybaster-1.jpg"[/IMG]Image and video hosting by TinyPic
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  • conradtnconradtn member
    imageJewelsW1980:

    Lifting you, baby girl and your team of doctors in prayer.  God is good and He will take care of you and your family.  We're here to lean on!! Hugs to you!

    Exactly this! I'm sorry you've been handed this news, but God is the great physician. Hugs!!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Married Sept 2008
    ~~TTC Nov 2010~~
    IUI #2: 1/21/13-100mg Clomid(CD3-7)(8M post wash) + progesterone= BFP!! EDD 10/13/13
    Beta #1=81.1 Beta #2=134.5 Beta #3=58.1 #4=2369 WTH?!-Not sure if its viable
    2/21/13 - Went to RE expecting the worse and saw the flutter of the heart.To God be the Glory!!
          5/29 - It's a Girl!!
    8/21/13 - Naomi born at 32w3d by csection due to Pre-E
    ~~PAIF/SAIF Welcome~~ 
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    imagephoto A789AD50-EAFE-4955-A617-02358EF02DBE_zpsbxkk1n87.jpg
    My Wonder Woman!

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  • PurpleIris30PurpleIris30 member
    I'm so sorry - I'll be sending positive thoughts your way!
    Married 8/2008. IVF with PGD March 2013.
    3/22 ER: 25R, 20M, 15F. 9 genetically normal, and 3 survived to Day 5
    3/27 ET: transferred 1 embryo, beta 9dp5dt=163, 12dp5dt=639
    4/25 1st ultrasound at 7 weeks = identical twins with heartbeats?!!!
    PPROM at 31w, delivery at 32 weeks of two beautiful girls
    image
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  • Gr8teGr8te member

    ((HUGS)) So sorry to hear the news.

    ~ Everyone Welcome ~
    TTC: 05/2011 Me: 32, All Clear DH: 38 Dx: MFI Low Testosterone & 1% Morphology
    IVF #1 w/ICSI & IMSI, 12/03/12: ER: 27R, 20M, 15F
    4 blasts frozen (3BA 4BA 4BB 5BB) b/c of moderate OHSS
    FET #1: 02/08/13 Transferred 3BA & 4BA | HPT 5dp5dt BFP!

    10dp5dt Beta #1 - 810 | 12dp5dt Beta #2 - 1843 BabyFetus Ticker
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  • Keephope2012Keephope2012 member
    Thoughts and prayers to you an the LO!
    Me:30 low AMH; DH:30 MFI (count, motility, morphology)
    2 rounds clomid 100 mg -BFN
    IUI#1- 25 mg clomid- July 2012= BFN!
    IUI #2 August = BFN!
    IUI #3 September = BFN!

    IVF #1 November - converted to IUI #4 due to poor response = BFN
    IVF #1.2 February- converted to IUI #5 due to poor response = BFN
    IVF #1.3 April- micro dose Lupron flare with HGH; 14R, 13M, 11F! Transfer of 1 day 5 blast on 4/30, 4 frosties. BFP! Beta #1 9dp5dt= 179; Beta #2 11dp5dt= 442; Beta #3 4106 Stick baby stick!!

    *trying to keep hope*




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  • Citygirl1015Citygirl1015 member
    Sending you and your sweet baby girl so many hugs and TPs.

    I live in Center City Philadphia, please let me know if you need anything or there is anything I can do to help while you're here.
    TTC #1 since Oct 2009, Dx: Unexplained Infertility
    HSG: Right tube all clear, left tube inconclusive
    3 failed Clomid Cylces
    4/5 lap revealed blocked left tube, but right tube is open
    April/May- 50 mg Clomid + Ovidrel + IUI #1= CANCELLED left ovary ovulating
    June 1- 100 mg Clomid + Ovidrel + IUI #1 = BFN
    June 28- 100 mg Clomid + Ovidrel + IUI #2 =BFP!
    7/12 Beta #1= 14 Beta #2= >5 Chemical Pregnancy :(
    July-Nov long break to recover emotionally and financially
    Nov 24- 100 mg Clomid + Ovidrel + IUI #3= BFN
    Jan 22- Gonal-F + Ovidrel + IUI# 4 = CANCELLED no response on right
    IVF #1- Start stims 4/7, ER 4/20, 21R, 14F, 6 frosties, ET 4/25, 2 embryos transferred= BFN :(
    FET #1- June 2012, Lurpon starts 5/27- CANCELLED
    FET #1 take 2- August 2012, delayed until Sept-CANCELLED
    FET #1 take 3- ET 10/11, 2 embryos transferred,= BFFN
    FET #2- Transfer 12/4--Cancelled, no embies survived thaw :(
    Next steps-- IVF #2 with new RE in March
    HOLY SURPRISE BFP 2/15/13!!!! Beta 1- 286, Beta 2- 782, First Ultrasound 2/25- baby in uterus & all looks good!


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  • jadweddjadwedd member
    Thank you all so much for your love, support, and prayers.  You keep me sane.  I am going to CHOP on the 9th to meet with the team and get more testing.  Love you guys!
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  • BeeBee08BeeBee08 member
    Many ((hugs)).  I'm so sorry to hear.  I've been praying for you and LO all along and I will continue to keep you in my thoughts. 

     
    me 33/DH 36
    ttc since 10/2008; d/x: mild MFI, stageII endo
    ~~PAIF/SAIF Welcome~~
    11 IUI’s = 1 m/c (7w4d)
    IVF#1 January 2012 BFN, FET #1 April 2012 BFN
    Surprise BFP October 2012 m/c (7w), Surprise BFP April 2013 m/c (6w4d)
    IVF #2: July 2013, ET 1 embryo 7/18, beta 1 @ 14dp3dt - 757, beta 2 @ 16dp3dt - 1762
    U/S 1 @ 6w4d = 1 little frogger with HB of 118, U/S 2 @ 7w3d measuring right on track with HB of 160
    Stick Frogger Stick! Please!!!!!!!!!!!!!   It's a Girl, EDD April 7, 2014

    BabyFruit Ticker

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  • afsalinasafsalinas member
    Your baby girl has proved over and over again that she is a fighter.  Sending T&P's to you and your family.
    ***Siggy Warning***

    imageimage
    Anniversary

    Started TTC June 2011Cycles #1-10 = BFNCycle #11: 100 mg Clomid + TI =BFNReferred to RE March 2012HSG all clear, FSH = 13, Prolactin = 28, S/A = greatApril 2012 MRI to check for brain tumor due to elevated Prolactin = clearJune 2012 Hysteroscopy to remove uterine polyps and partial septateJuly 2012 IUI #1 7/7/12 = BFNAugust 2012 IUI #2.1 Cancelled due to early/missed ovulation = BFNSeptember 2012 Forced break due to one huge cyst October 2012 IUI #2.2 = BFNNovember 2012 Begin BCPs for IVF #1December 2012 IVF #1 = Delayed due to cyst. Start stims 12/22January 2013 ER: 1/2, 14R, 10M, 9FET: 1/7 Transferred 1 "Perfect" blast! 4 frosties!Beta #1: 99 BFP! #2: 227 #3: 584 #4: 3,020Baby Boy born September 25, 2013

    TTC #2
    November 2014 - Begin BCPs
    December 2014 - Start Lupron 12/25
    January 2015 - FET #1

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    *Everyone Welcome*


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  • futurehuberfuturehuber member
    Oh hun, I'm so sorry to hear you are having to deal with all of this.  I will keep you and your LO in my prayers.  FX that it isn't as bad as they think or that they can easily fix it.  So glad you have access to great care!
    TTC #1 since Sept 2011
    Me: 33, DH: 35, DX: PCOS & MFI (low everything)
    IUI #1-3 - Low Post-Wash Counts - All BFNs
    IVF #1 w/ ICSI: Long Lupron Protocol - Freeze-All Cycle due to Severe OHSS
    ER 4/27, 33 Eggs Retrieved, 13 Frosties
    FET #1 6/5, Transferred One Perfect 4AA Blast, HPT BFP @ 6dp5dt
    Beta #1 - 209, Beta #2 - 508, Beta #3 - 1,059
    EDD 2/20/14
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  • TrixieGirl82TrixieGirl82 member
    ((Hugs))  So sorry you guys are going through this.  I will be praying for you and your little girl.  She has been such a fighter since the beginning I'm sure she will continue to be!
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