Goodness Gracious So Very Sweet!
Anne was born April 28 and died June 28, 2005. She is our 3rd child--the 2nd to precede us in death. Nothing is more shattering than burying your children. Our comfort is that they bear witness to the Good News of our Resurrection in Christ Jesus. Anne was met in Heaven by her sister, Abigail, who died of a preventable cord accident at term in 2003.
After meticulous cycle charting, Anne was conceived on September 2, 2004. We took our care to the university teaching hospital where they specialize in high risk pregnancies.
As with Abigail, our pregnancy with Anne was uneventful & delightful all the way to the end. We opted out of any invasive tests since we didn’t want to put the pgcy at risk. We’d already lost one fullterm baby and we knew we’d be having multiple level II ultrasounds along the anxious journey.
In fact, we learned the hard way after Abigail’s sudden death that our children are often only borrowed to us for a short while, and thus we wanted to have as much joy during Anne’s pregnancy as we possibly could. A subsequent pregnancy after loss (SPAL) is anxiety-riddled enough without adding more. We knew such added stress wouldn’t be good for mama or baby.
Moreover, in retrospect, we're fairly convinced that the quality of prenatal care we needed would have been dramatically compromised if our doctors had known about Anne’s trisomy prior to her birth. So in that respect, we’re very glad we didn’t have the amnio that everyone says "I told you so" about.
In addition to the many ultrasounds, we also had an ECG which is an ultrasound that takes complete stock of one’s cardiac health. It never picked up on the VSD that ultimately killed our little Anne. VSD is a hole in the heart that is common in newborns, and often repairs itself in time. Surgical correction is also quite common.
Astonishingly, we went through the duration of our pregnancy having THREE perinatologists and TWO expert techs doing our ultrasounds, and NONE of those providers ever picked up on a single softmarker for t18! In fact, they even sent us home with a photo of Anne’s little hand waving at us. Ironically, we found when she was born that she had classic Edward's finger deformities. Trisomy 18 is also known as Edward syndrome, and a crooked forefinger is a classic marker.
In addition to working with our plethora of medical experts, we also had the Director of Fetal Imaging sign off on every ultrasound they performed. We sat and watched her comb over every ultrasound photo they took, and even she didn’t catch a single marker.
One is tempted to ask how such a mis-diagnosis is even possible in today’s medical technological world? Our question is why should we put such stock in the advances of technology in the first place?!
Clearly, Anne was mis-diagnosed every step of the way--in favor of health. Certainly, it would seem reasonable that they mis-diagnose many patients they deem "terminal" or “incompatible with life” as well.
And yet how little those who make prenatal diagnoses often know about trisomy 18! After all, they are maternal fetal medicine specialists, not geneticists or specialized pediatricians. The trisomy information we received neonatally after Anne's birth was worlds apart from what we received during our prenatal genetic counseling sessions. Such discrepancies of information made us question how doctors could make prenatal recommendations with such little working knowledge of trisomy 18--especially when prenatal DNA information can be so insufficient in determining a patient's prognosis (even with amnio).
With prognoses often being so unique & individualized for each patient, it seems so medically inconsistent to use phrases such as “incompatible with life” when so many LIVING with trisomy 18 fail to fit that medical model.
So Much More They Could Have Done
Since Abigail suffered from SADS caused by late term cord constriction; we monitored Anne's late term growth vigilantly. We scheduled induction for April 28, but Anne ended up being born by c-section after having some cardiac issues in early labor.
It was after Anne was born they found her VSD. That and her other softmarkers led them to suspect trisomy 18. The blood test came back a week later confirming trisomy 18. Of course they never expected her to live long enough to see the test come back, but she had her own ideas about life.
To answer the question: Yes, it was very hard having our happy birthing day shattered by the unexpected news that her life might be very short. Such a shock after anticipating a healthy baby is still something we struggle with.
But in hindsight, we’re glad we didn’t know earlier, and we’re very VERY glad our doctors didn’t know (even though we often ask what all those expensive ultrasounds were for if not to give them at least a clue at some point in the prenatal healthcare journey).
Once she was cooing in our arms we didn't have time to wonder how it got missed. Our focus was on Anne. Our only desire was to love her for as long as we had with her. Our desire was to rally along side her so that she could shine forth her own person--her own remarkable and wonderful person. Our job was to believe in her and love her just as she was--and she was so very spectacular! What a remarkable person she was...
She proved herself to be such an awesome baby---so very sweet and sparkly; alert and vibrant; reactive & interactive. She had a great little character with a great personality! She wanted to be part of us as much as we wanted her. Her awareness of us and interaction with us was incredible.
We were amazed at how much love she exuded. Of all the things about her, I miss that the most---she was so loving for such a tiny little creature. She reminded us that the human condition is designed to give & receive love, and no DNA disability ever alters that fact. It makes us sad to think of how much love she could have accomplished in her life if only someone had helped her manage that troublesome little hole in her heart...
Sadly, the university hospital policy was to retreat on any specialized cardiac care when trisomy 18 is indicated. They told us bluntly that Anne wasn't even a candidate to see their cardiologist once her trisomy was confirmed. Across the board, patients with a trisomy 18 diagnoses are brushed off for dead--even those who hold promise for survival; and thus no wonder so few trisomy 18 patients survive! We were unprepared to seek medical help outside our state. We will always struggle with sorrow over the fact that we didn't do more to find better medical care for her.
It crushed us that if the largest teaching hospital in our state wouldn't help us, then who would? Who would step up to the plate and offer specialized medical care for a patient who was still very much alive; a patient who was not dead yet---a patient that just might NOT die if given the appropriate medical attention.
Admittedly, it still makes us angry to think about how difficult it was to get them to see our daughter as a living person once they labeled her as “incompatible with life.” She is dead now, but she wasn’t then, and the care they deprived her of speaks emphatically of medical politics that must be changed.
Medically, all we had was Anne’s pediatrician to help us with her complex VSD and specialized trisomy 18 needs. And as much as we loved Anne’s doctor, she was inexperienced in trisomy 18 and VSD--although she did go the extra mile to help us with a plethora of information about non-surgical VSD management. We came to learn that Anne's VSD could have been very well managed with simple medicines before even considering surgery. She even hinted that with proper cardiac management, Anne just might grow big & strong enough to have the surgery to repair her VSD.
Anne’s pediatrician was one person who cared & took action beyond the medical policies. We'll always appreciate her for that because she was THE ONLY doctor or medical personnel we encountered that actually practiced with hope rather than gloom.
In fact, it was once she put Anne on a simple cardiac medication called lasix, that Anne really started to shine. It worked great at controlling Anne’s pulmonary edema that took so much toll on her. We came to learn later, albeit too much later, that in other parts of the country there are pediatric cardiologists who would have worked with us in spite of Anne's trisomy. Sadly, our state is sorely lacking in sound medical care for such patients.
We firmly believe that with a little better cardiac care she just might have kept on going a good while longer. It's now our fervent aim to see more cardiologists take interest in caring for trisomy 18 children.
Hospice: Help or Hindrance
So with our heads spinning and our hearts crackled, the university sent us home with their hospice team for death comfort. We had rallied for home health care nursing, but they wouldn't hear of it. Regrettably, hospice only specializes in death, and they didn't understand that our fervent hope was for Anne to defy their assumptions.
Once we were home, we came to learn that hospice’s perspective on trisomy 18 maintained even less hope than did the university personnel we'd encountered. And yet how little the hospice team knew about trisomy 18 children who were living nation-wide and throughout the world. In our relationship with hospice, We found ourselves in a place where NO ONE but us ever expected Anne to grow or thrive. They were a great help in preparing for Anne's death, but we were virtually abandoned in having anyone help us to prepare for her living. We needed medical providers with a dedicated purpose to do both--preparing for life first then death, not vice versa.
Gratefully, Anne's desire was to live and she set out to meet her parents’ expectations for life rather than that of hospice's expectations for death. She proved herself by gaining over 3lbs & over 3" in growth before she died. She was smiling and lifting her head and very much responding to the world around her. For the time being, the $4 lasix was our simple solution to a complex problem.
To our dismay, hospice decided to take Anne off the lasix--a decision made independently of our pediatrician--why we don't know. We've speculated, we asked, they avoided giving a sound answer... We struggled & turmoiled over their decision. Of course, the trisomy 18 diagnosis covers their liability with no legal or moral culpability.
We don't know what motivated them to make such a decision when a simple $4 bottle of lasix was helping Anne overcome her cardiac issues. We do know that they had a policy of "no curative measures" and the lasix was doing a lot to give Anne a living future.
Our experience with hospice was very much a double edged sword in that they were kind and available to assist us with the medical care of our child, but they were also rather like "gentle vultures" always seeming to want the "inevitable" to hurry up.
So ultimately, for whatever reasons, hospice discontinued Anne's lasix and she died of congestive heart failure within 10 days of their directive.
Our pediatrician was stunned. She had even compiled a plan for increasing dosages to accommodate Anne's growth & weight gain. The first thing she said when we told her that hospice had discontinued the lasix was: WHY? That's the million-dollar question that we'll never get an answer to.
Bottom line is that many medical and hospice agencies brush such a patient off as dead before they really are--death is their job, and trisomy 18 has a certain status quo that most medical providers are unwilling to change.
Additionally, it's important for us to make people aware that Anne died of congestive heart failure. Her heart failed because of VSD--ventricle septal defect. A small hole in the lower ventricle of the heart. Trisomy 18 often causes VSD. And yet, VSD is also relatively common in NON-trisomy newborns as well. Those patients routinely have their VSD dilemmas treated without quarrel.
Moreover, it's important for us to explain that even though Anne died of congestive heart failure, her death certificate indicates that her immediate cause of death was trisomy 18. This is a gross medical inaccuracy!
In truth, it was not Anne's trisomy that killed her as much as it was her untreated heart defect that was to her unfortunate demise. And yet, Anne's death certificate indicates congestive heart failure, not as primary cause of death, but as the TERTIARY cause. And thus we deal with medical politics even in the certification of her death.
Such medical inaccuracies in diagnostic record keeping may seem like insignificant semantics to many, but such records are what create medical statistics--which in turn, lead doctors to believe (and advise) that ALL trisomy 18 is "incompatible with life." Medical policies are then instated that may have detrimental consquences for patients with trisomy 18.
Such practice is neither fair, nor medically accurate. Additionally, such medical practices then make it "ethical" for medical policies to be created that then deny better specialized care for those patients who would benefit most. This must be changed!!!
Politically, Anne was deemed a non-candidate for any cardiac care thanks to her trisomy diagnosis--a diagnosis which very few doctors know anything about.
In spite of their trisomy politics, she loved & grew until her VSD couldn't maintain her life any longer. She died at home in her mother's arms June 28, 2005 at 11:03pm.
By the goodness of God's Redemptive plan, we will meet Anne & Abigail again on the Other Side of the Rainbow.
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Sun, Sep 21, 2014
Thank you for telling me the story about your daughter. I had the same situation in that I went the whole way through the pregnancy and I didn't know anything about Trisomy 18. I had twins. One survived, the other didn't. Your story helps me to learn more about Trisomy 18.
Tue, Jul 15, 2014
I don't understand why you didnt personally give your child the lasix when the hospice team stopped it?
I came here because I was looking at images in G00GLE and there was your gorgeous baby.
So beautiful in fact, I wanted to know more about this child and if she grew up to be the beautiful, even stunning girl she showed as an infant.
I am sorry for your loss and only had that one question.
Tue, Jul 08, 2014
Rejoyce with the knoledge that you will meet with tem again. God bless you
yolanda and quincy stewart.
Tue, Jun 10, 2014
I know the feeling we were told yesterday,that our mary Elizabeth has vsd after numerous ultrasounds now four weeks before delivering they add this. Our hearts are very heavy. But we a hopeful .thatnks for sharing your story.
Mon, May 05, 2014
You had another birthday last week. It's hard to believe it's been nine years since that wonderful day when you brought so much love into our lives. What a wonderful girl you were! I miss how sparkly you were, how sweet you were--so very sweet! Spring won't ever be the same without you here; but to be certain, the spring will always remind me that you were...
Thu, Jan 16, 2014
i feel so bad for you family and it was so sad. I hope you guys are happier. God be with you
Wed, Oct 30, 2013
Oh my sweet Lil' Darlin' how much I continue to miss you (and your sweet sister, Abigail). You have touched the hearts of so many, and given strength to many as they continue to fight medical politics that are unfair & unfounded against the patient with a third 18th chromosome. You continue to prove, even from the Heights of Heaven, that medical care should be available to everyone born--especially those who need it most! No one should ever ever be denied medical care simply because of a trisomy diagnosis, and your sweet face and sparkly demeanor reminds so many people to challenge the status quo in the medical lordship of political incorrectness. They who denied you basic cardiac care simply because of politics, are worse than the spammers who continue to attack your Legacy Page. They're worse than the worst, for they devalue the life of children as precious as you, and send so many so needlessly to their deaths without ever bothering to see if their so-called "skills & knowledge" were worth a jot. Jesus said, it's better than a mill-stone be hanged around their necks and they be cast into the depths of the sea. You, My Sweetpea, continue to fight the Good Fight even from so very far away as Heaven; for you continue to tell people to never stop fighting against those politics that would deprive a child of their precious value.
Mon, Oct 07, 2013
Thank you for sharing your story. You and you family are in our prayers. I work with special needs students and we have a sweet little girl with trisomy 18. She just turned five. She has a large (unrepaired) VSD and pulmonary hypertension. She loves school.All who work with her immediately fall in love with her.We don't know how long she has, but we just enjoy every day she is here.
Thu, Oct 03, 2013
My heart breaks for you.It was like you had to be your own medical detective and then to find your precious child could of lived longer. We trust the medical field to act in our best interest-do they not understand as a parent we will do whatever it takes. I wish you the best.
Wed, Sep 19, 2012
I just wanted to stop into my Sweetie's guestbook and thank those who have left love, hugs and prayers for our family--for reading of Anne's story, and for sharing your stories with me about how you too have been impacted by unethical medical politics. Your stories and sweet babies are not forgotten, and we seek to always keep each of you in our deepest prayers for strength & comfort. It's truly a tragic shame that so very many of us have had such similar experiences in dealing with the angst of such horrifying medical politics when it comes to medical care that should be available to EVERY SINGLE PATIENT IN THEIR CARE--REGARDLESS OF DIAGNOSIS. It's not right or fair on any human level to withdraw care for patients who need medical care. Such a practice is called EUGENICS. The death certificates many of us have been issued for the untimely demise of our precious children typically note trisomy 18 as the cause of death, giving the medical world free reign in their false claim that trisomy 18 is "incompatible with life." The real truth is that many of our children have been victims of EUGENICS. We are ultimately the strong-of-the-strong, having to juggle both sorrow & rage--sorrow that our children are not here with us, and rage that medical politics aided in their absence. Together, we will help change the eugenic policies which kept our babies from staying longer. May God bless all of you as you travel this unruly & unpredictable path of grieving...Vickie, Anne's mama
Tue, Aug 14, 2012
I am very sorry for your loss of sweet Anne and for the unfortunate lack of life-empowering support provided. I take care of a 15-year-old girl with full Trisomy 18. You are right that kids can live well and the medical community needs to recognize that more. SOFT and Trisomy 18 Mommies on FB are great resources for support and information.
Sun, Aug 12, 2012
Sorry for the death of your beloved daughter.
My daughter and husband are now going thru the exact same thing....almost 3 weeks into her life...she has a hole and an enlarged heart.... we are still praying for the best outcome.
we will not give up...even if the doc's do...
I don't know how we will get thru this...
God Bless you and your family.
Tue, Jul 10, 2012
My great niece has trisomy 18 also. She was born 7 days ago. I found your story while trying to research and make sense of this nightmare we are in. God bless you.
Mon, Mar 05, 2012
First of all let me say I am praying for your recovery and peace. I commend anyone that elects to carry a t18 to term. The Lord has a special place in heaven for you and your family. I am currently 23 weeks pregnant with a full t18 baby and my Ava Grace already has her death certificate planned out by the md's. She has VSD and spina bifida on top of everything else. I could not believe my ears when my dr said that even if she did well after birth that nobody "around here will do surgery". Does anybody know a surgeon that would take on this challenge? If so please email me at firstname.lastname@example.org. I am calling all of the states surrounding me to see if they have anyone as well.
Sat, Feb 25, 2012
I just wanted to say how much your story reflects our experience with our daughter Hazel. She was an active little girl from the start and that never ever faded from her. She was diagnosed with T18 at 21 weeks and from there the death sentence was handed down. Every thing was done to meet Hazel alive by our obstetrician but that is where it ended. She was very small at only 3lb 4oz but she fought for life with no help and was so alert and interactive with everything and everyone! But, they were as you say just waiting for her to die. We did all that we could - she lost a lot of weight and I asked for supplemented milk for her to gain some weight - they denied it, can you believe they wanted her to starve to death, which was an option the paediatrician gave us after refusing to give Hazel a bed in NICU just minutes before my c-section. Passive aggressive is what I would call her care by them "we are here to support you fully in what you want", as long as it is what we want. I am sorry but I have just lost my girl on the 26.01.2012 so this is very very raw for me and I miss her so much! I have so many regrets that I wish I had pushed harder, screamed more..... but I can now only wait until I see my little one again when he calls me back. I don't believe anyone but God should be playing at being God, and that includes doctors.
I hope that you have let go of some of your regrets, I've not let go of mine but we have been in the middle of a very emotional and difficult fight for our children's right to their life, what ever their potential and however long their life was to be. I dont believe the medical profession should be determining that our babies dont have a right to their life. xx
Mon, Feb 06, 2012
To the family of Anne Bacon;
I am sorry to hear of your loss. Your story has touched me. I too know what it is like to lose a baby to Trisomy 18. My daughter Sarah K. Edwards went to sleep 2 yrs ago. She was six mos old. She never got to meet her baby brother born in 2011.
During our greiving we have found comfort and hope in the Bible. And I would like to share a few scriptures with you.
Job 14:14 asks a good question it says, "If a man die, shall he live again?" Isaiah 26:19 along with other scriptures answer this question. It explains, "Thy dead men shall live, together with my dead body shall they arise. Awake and sing, ye that dwell in dust: for thy dew is as the dew of herbes, and the earth shall cast out the dead." Doesnt that sound wonderful?
This verse says that dead men will live. That death will be cast out.
A promise from God is found in Acts 24:15 talks about a resurrection of the just and unjust.
Luke 20:38 explains that God is not the one that takes lives. He is the God of the living. Then who is taking lives?
Hebrews 2:14 gives us that answer. It reads, "Forasmuch then as the children are partakers of flesh and blood, he also himself likewise took part of the same; that through death he might destroy him that had the power of death, that it, the devil;" This verse says that the devil takes lives.
John 5:28, and the beginning of 29 reads, "Marvel not at this: for the hour is coming, in which all that are in the graves shall hear his voice, And shall come forth; they that have done good, unto a resurrection of life;"
Not long after saying this, Jesus met a funeral procession coming out of the Israelite city of Nain. The dead young man was the only child of a widow. On seeing her extream grief, Jesus was moved with pity. So addressing the corpse, he commanded: "Young man, I say to you, Get up!" And the man sat up but it wasnt in heaven it was on earth. We know this because Jesus gave him back to his mother. Luke 7:11-17.
I hope that the information helps, and that it brings you comfort in seeing and holding your precious Anne again. This time it will be forever, a promise in the Bible found at Psalms 37:29.
If you would like to talk my email is on my daughters Sarah K. Edwards legacy page. Thank you for reading my letter.
Sat, Mar 19, 2011
To reiterate: I don't want anyone to get me wrong cuz God really is ultimately in charge of how many days each of us gets, so we can't blame doctors entirely.
But let us not forget that we are told, "thou shall not kill" because humans WILL do things or neglect things that can & will cause people to die needlessly.
My child's time table was ultimately in God's hands, but there were also those who pushed that time table closer to the cliff's edge and robbed her (and me) of what time she could have had. Thus, those medical people with their indifference, apathy and their Arian race mentality, will also be held into account for why they contributed to Anne's untimely death (not to mention all the other innocent victims they counselled for abortion etc).
See, as a medical professional its a crime in most states to do nothing--except in cases of trisomy where it's actually MANDATED in most states to do nothing. Only private physicians or ones defying the "norm" open themselves up to treating trisomy patients. Such doctors are truly commendable.
But which make state or federal policies & laws that give license to doctors that not only allow a doctor to pick & chose who lives & dies, but then the policies actually require that state paid doctors withdraw from ANY additional care when trisomy is indicated (even if the infant's issue isn't in anyway related to the trisomy). Such policies are a horrid crime of human rights & ethical abuse that will ultimately be held in God's tribunal, in God's presence. It will be then that those medical personnel will learn the hard way that God keeps score on everything, and such vile crimes against trisomy babies on the very top of His accounting ledger.
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