Carrying to Term- Personal Reflections

“Isn’t it difficult?”
“Why should a mother have to put herself through so much grief, for a child who isn’t going to live anyways?”
“I couldn’t let my baby suffer like that.”
“You must be so sad.”
“The specialists told us that there was zero possibility the baby was going to survive.”
“I just don’t know if I could be that strong.”
“What’s the point?”


"I couldn't put my children through that."
I have heard all of these statements. I have also heard  many more, less benign ones, coming from people who were trying to understand the choice to carry a child to term, who was “just going to die”, anyways.

Here are a couple of things I have to say to these questions and statements:

WHAT THE EXPERTS HAVE TO SAY
As far as “expert” opinions, I had many. I saw many different doctors and specialists during my pregnancy. They all had different opinions.
At 9 weeks gestational age, we were told that there was something seriously wrong, and I would most likely miscarry the baby. She had developed Hydropsy Fetalis. This can be fatal, and usually doctors treat it as fatal, even though there are a large number of situations where it has corrected itself at a later point in the pregnancy. This would have been the ideal time to terminate the pregnancy, as my doctor explained that this showing up so early meant serious fetal malformation. A heart or CNS disorder, based on the timing.
I still had hope.

By 12 weeks, we were told that (magically) the Hydropsy Fetalis had resolved itself. There was a thickened nuchal fold translucency, but this can be an indicator of survivable disorders, so we weren't too worried about that. We were just glad to have experienced our first instance, of many, where "the doctor was wrong."
 
At 16 weeks gestational age, we were told Beatrix was most likely going to die. They used the words "incompatible with life". The word compatible means “capable of existing together in harmony.” At that moment, my womb was quite a harmonious place- she was existing. 

(Since we received our diagnosis an Irish organization called "Every Life Counts" has presented their stories to the UN, in hopes that this terminology will eventually be eradicated from common usage. If you are a pro-life physician, please sign the Geneva Declaration on Perinatal Care HERE, to show your support and willingness to avoid using language which discriminates against neonates who have been given a poor prognosis) 




The doctor was projecting his experience, which was valid, of the type of defect complex he was seeing at the moment. We were told that babies with cystic hygromas and omphaloceles together most likely have genetic disorders. Most of them are miscarried, and the ones who don’t miscarry, die.
Except for the ones who live (doctors do make mistakes).
At that point- she was living, making the diagnosis incompatible with life a lie. At that moment, she was definitely alive. We could see her move, and when they tried viewing her facial features (certain genetic disorders have very specific facial anomalies), she kept moving her hands in front of her face, as if she didn’t want us to see.
I still had hope.
When her genetic profile came back perfectly normal, we celebrated.
Evidently, omphalocele and cystic hygroma didn’t actually always indicate a genetic disorder. Often times, they are both seen together with no genetic disorder. We actually found that when an omphalocele contained organs besides the intestines, which hers did, it usually is an indication of a non-genetic disorder. Not only was the doctor ill-informed about a subject he was an “expert” in, but he was encouraging us to terminate our pregnancy based on his misinformation.
He was also still certain that she would not survive for very long, or even if she would be born. At every appointment, we were told that we would be coming back to report miscarriage. Didn’t happen- my womb was one harmonious place.
I still had hope.
At 20 weeks, and with a new doctor, we were told that things look grim, but that as long as she was hanging on, there was a possibility of survival.
Wait, what?
She wasn’t absolutely thriving, because of her defects, but she was alive. If we could make it to term, and she could breathe- she could survive. All of her defects were correctable on an individual basis.
At 26 weeks, we finally had a final diagnosis, and it was indeed a known disorder. One which has only 4 documented survivors worldwide. I wept. I remember walking out of the ultrasound room- my husband couldn’t enter with me because we had my 8 year old in the office. I recall saying to him “just please get me out of her. I have to leave now.”
And even then, in the middle of my sorrow, in that moment, I still had hope.
There were four survivors.
And my daughter was alive at that moment.
I know in all of what you’re reading, you are thinking, well, ok. - but what about a situation where there is a fatal defect.
Make no mistake, this is a fatal defect. Look it up….. it’s as clear as black and white.
Limb Body Wall Complex is a lethal disorder.
Except for the four survivors.
Who are living.
An ultrasound screen can show an anomaly that is not present at birth. It can show normalcy when there are actually anomalies. There’s a lot of shadow there. A lot of room for confusion and mistakes. A doctor cannot make a qualified judgment based on an ultrasound image. There is too much room for error.
There is no 100%, when it comes to diagnostic testing.
Mistakes are made.
Test results can get mixed up.
You could be one of those super rare cases of placental mosaicism- where the amnio picks up trisomy cells from the placenta, but your baby has perfectly normal genes. It could be as simple as one tired nurse confusing your amnio samples with someone else’s. Or a technician to accidently label a slide wrong.
It happens.
I was willing to carry her for as long as possible, even though the experts gave me such a grim prognosis- why? Because until she stopped breathing and her heart stopped beating, she was alive and there was a possibility of survival.




CHILDREN
There is nothing more difficult for a parent to contemplate, than their child's suffering.
Especially when it seems so needless.
Why make your children go through the death of a sibling? Why make them experience the sadness of a funeral, of possibly seeing the tiny body of a baby that won’t be coming home. Of giving them a visual image of death that could possibly touch them?
Because you are going to lose a baby, whether due to natural causes or termination. You are still going to be sad; you are still going to exhibit similar grief as a parent who has carried to term.
For an adult child, or really any child over the age of 13, death has most likely become a reality. Every day on television children die. They are old enough to recognize that bitter fact of life. You aren’t protecting them from anything but the very real emotion of allowable sorrow. Sorrow is normal when someone dies. They may feel hindered from expressing this, because a choice has been made. They may feel guilty, or somehow responsible, again because a choice has been made. Also, if you allow them to believe that you miscarried the baby, the consequences can be disastrous. With deception, you run the risk of them finding out at a later date, and the type of honest relationship you would like to have can be damaged.
With younger children-between the ages of 3 and 12, death can be traumatic if handled in the wrong way. But if handled in a loving way it can just be another part of their internal roadmap. Children have a fluid sense of life, and smaller ones do not always understand the finality of death.
Even for the smallest of children, those less than three years old,an unsettling mood in the house, if a termination or pregnancy loss is hidden from them, can be a cause for anxiety. Just like with an impending divorce, or financial hardship, your child will know that something has happened. They just won’t know what. And because they aren’t quite old enough to grasp that finality, protecting them would seem to be unnecessary.
My 8 year old son speaks openly about his baby sister. He had no fear of holding her at the funeral home. He didn’t see death when he looked at her, he saw his sister. He spoke to her, while holding her in his arms. She was nothing more than a tiny baby. When he was finished loving her, he quietly handed her back and moved onto something else.
My son’s life was not impoverished by the pregnancy and short life of his sister. My son’s understanding of the fragility of beautiful moments was expanded. It was a valuable lesson in acceptance and peace. It was a lesson in which loving someone else was the main subject.
He knew that most likely, Beatrix would not be coming home. This was sad, but he was very matter of fact about it. Unlike most adults, he accepted what was, was. It was about finding the best moments of a bad situation and making them his way to celebrate the time he had with his baby sister.
Young children usually take life on much better than us adults do. They haven’t developed the cynicism necessary for lying to themselves about the hard parts. So they don’t. They find it much easier to celebrate the small victories and to accept graciously that we don’t always win.

SUFFERING

Pro-choice groups have long fought to dispel the idea that a fetus feels pain- yet they are the ones who push termination for the sake of the fetus.
Which is it? Does the fetus feel pain, or doesn’t it?
I can’t speak for everyone else, but we were assured by measurable and immediate stress tests on our daughter, that she was not feeling any pain. These were tests where there was no room for error, as they were happening in real time. Tests which were clear and concise, even to us laypeople. Fetal heart rate was one of the biggest factors in comforting us, and allowing us to acknowledge that she was really ok in there. Once they began tracking it after 9 weeks, it never raced. She never showed any sign of fetal distress. In fact, once when we took a cloudy look into the womb, she smiled for us.
(I know that’s not diagnostic, but it was sweet)
If a fetus can feel pain, and I believe they do, how is terminating a pregnancy going to solve that problem?
It’s not just “removing life support” as doctors like to say. You are actively causing death. It’s the difference between removing life support in a terminally ill patient and allowing nature to take it’s course, or euthanizing them through extreme violence.
I want to be clear- I am not talking about induced labor for medical reasons. I am talking about induced abortion, involving a D&C.
There is some debate about induced labor in this whole miasma of ethical issues, and while I wouldn’t do it, I do understand people’s viewpoints on the subject, and I respect those viewpoints.
There are valid ways to diagnostically test for fetal stress, in real time- tests that you can see and hear yourself, in a doctor’s office during your appointments.

GRIEF

(And keep in mind- "GRIEF"centers on the reasons it is beneficial to YOU to continue your pregnancy, not on your baby)

Most of the rest of the statements and questions that people have asked me have to do with my grief. That is the simplest answer of all, in a way.

This was my daughter. I don’t know if I would have grieved any less if she had been lost at 12 weeks, or 16 weeks, or 20 weeks. I lost her. I grieve.
Whether I chose to have an induced abortion or not, I still would have lost her.
Bluntly, and I apologize ahead of time, a dead baby is a dead baby. You don’t lessen the loss by aborting the fetus.
But, I can tell you what is one of the biggest differences.

It's in the memories you make.
There are no photos, no tiny footprints to wear in a locket over your heart. You get no little clipping of hair, no memory of how sweet she/he looked while in your arms. You get no opportunity to say goodbye on your own terms. No baby smell.
You don’t know if your baby has Grandpa Fred’s nose, or Aunt Lisa’s lips. Dad’s hair, Mom’s hands…..
After your procedure, you may ask for a mortuary to pick the remains up depending on the laws of your state, but there is no guarantee that this will be available to you. Once the fetus has been removed, it is considered medical waste. You cannot dispose of the remains as you see fit. If your state, or the state where you are having your abortion does not allow this, then your baby will be incinerated- not cremated, incinerated.

The other troubling aspect, in reference to grief and abortion in this particular case, is that choosing abortion expands the delusion that somehow we can control mortality.

People die.

Children die.

Babies die.

We have no control over that.

A perfectly healthy infant can be born still, and a 7 month old baby can be a SIDS victim. There are car accidents, accidents in the home, swimming pool accidents- the list could go on. At what point can we say, "O.K. He's safe from death?"

At 3 years old? 6? 15? 25? What about 30?

Never.

We have no control over life and death. At any point.

No matter how we may like to think that we do- we don't.

Aborting doesn't serve any purpose but to cut short the pregnancy process in an unnatural way. You still have to wake up every morning with someone missing.
I guess for me, the extra few months of carrying her to term were worth it, just to have her with me for the short time I had her. I am so glad that I was able to see her features, and so grateful that she is not just some faceless baby from my dreams. I know that not everyone feels the same, but there is no such thing as a waste of time when it comes to dreams of your child’s future.
I have tangible memories of my daughter. A birth certificate, a footprint cast in clay.

These things are so important. I treasure them- when I look at a photo of her, I can remember her alive. I share a bond of memories. These things bring me back to the place where she was living. Where I held her- HER- in my arms.

While you see my grief evidenced here, please be aware that never is the grief so great that I wish for the cause of it not to have happened.

Carrying to term, in the end, is a kind, ethical choice for someone facing a poor or lethal diagnosis.