Moving forward - My fear

I wish I could kick my fear in the balls, render it impotent and incapable of propagation. Sometimes, I think that I could summon the strength to do that.  But on many days (and especially premenstrual days like today) those moments are brief. For some reason it is far easier to throw the world’s most lavish pity party and get drunk on copious amounts of negativity. Of course we would like to have a take-home baby. We had assumed that Grace would be the one, and were completely invested in and committed to raising her.  Contemplating the road which we need to travel to have another child (and for me, the idea of another child is quite something to wrap my head around because my husband and I had agreed that we would be perfectly content with just a single bub) is just so daunting and uncertain. So, rather than having my fears continue to fuel the tsunami in my head I have decided to put to paper exactly what it is that scares the absolute shit out of me (well other than the obvious). Facing my fears head on! This should probably come with a disclaimer, because I don’t want to infect anyone else with my paranoia. So read on at your own risk.

1.       FEAR. Yep, of all the things to be worried about, it’s fear itself. I am afraid of being afraid.

2.       Not getting pregnant. We fell pregnant with Grace within a month or two of trying (we were so SO very blessed not to have been plagued with fertility issues) and it was plain sailing from there. That is, until she died. My crazy brain can’t help but think that she was our one in a billion. And she was – there will never be another Gracie Face. But past fertility is no guarantee of present fertility, and so maybe there will never be another child.

3.       Getting pregnant. Oh god, a positive test!! Joy? Of course. But fleeting. Terror? Absolutely – truckloads. Anything we can do about it? NO. Ride the rollercoaster (I have never and will not ride a real rollercoaster by the way – just the thought of how it will make me feel causes panic to set in, I feel lightheaded, my heartrate accelerates and my palms sweat). What are we thinking?!

4.       Ectopic pregnancy. The risk is between 1 in 40 and 1 in 100 pregnancies, and the risk increases if one has already had a prior ectopic. Having had a cesarean complicates matters somewhat, as there is also a chance of the embryo implanting in the resulting scar tissue. Of course, I am convinced that this is going to happen. Why wouldn’t it? No risk factors = dead daughter. So now with a risk factor in tow, in my mind the negative outcome is a fate accompli. I have two friends who have had ectopic pregnancies. The first had a very rare ectopic following on after the birth of her first child via, you guessed it, cesarean section. The embryo implanted outside of the womb and due to a high risk of both fetal and maternal mortality she had to terminate. The second friend had an ectopic trophoblastic (mole) pregnancy – i.e. the sperm fertilized the egg and it implanted in the fallopian tube. But instead of a baby developing a mass of cells grew. I’m happy to report, however, that just over one year on she is currently pregnant (due in July) and for now things are going well. She found out she was pregnant within a week of Grace passing away, and I’m pretty sure it hasn’t been easy for her.

5.       Miscarriage. One in four pregnancies.  In my immediate group of friends I know of at least six who have had miscarriages (all in the first trimester), two of whom had more than one loss. All of these friends now have living children, though, so I guess that’s something to celebrate (a glimmer of hope – REALLY?).

6.       We’ve made it into the 2^nd trimester – ok, so this is for realsies!

7.       Abnormal test results. With Grace, we tested only for spina bifida, and had monthly ultrasounds to check her development (including one where the ultrasound tech did all sorts of measurements on her heart, kidneys etc – perfectly normal). I am not sure if we would extend the testing this time round unless there was something on the ultrasound which set off alarm bells. But, as you guessed, I am convinced that there will be something wrong. Following a miscarriage and one take-home baby, my colleague terminated her third pregnancy at 18 weeks after severe structural abnormalities were identified on an ultrasound and testing revealed a host of chromosomal abnormalities including Downs. Her and her husband have now resigned themselves to only one living child – genetic testing indicated a much higher than average risk for chromosomal complications and they are not willing to undergo IVF where the embryo is tested prior to implantation. How much can we endure???

8.       Placenta previa – I had this with Grace initially, but the placenta eventually moved up. However, the risk of placenta previa (and placenta accreta) is higher amongst women with a history of prior cesarean section. A few days prior to Grace being born, a schoolfriend’s sister died having her third child as a result of complications from placenta previa and a cesarean section. (You may have noticed the trend here – basically, name the adverse pregnancy outcome and I personally know someone who has experienced it. And these are not women who I have met as a result of losing Grace – I knew all of them before).

9.       Infection. In January, the daughter-in-law of the minister who married us and who conducted the service for Grace lost her baby at 24 weeks due to infection. My obgyn has flagged my file to test for Group B strep next time around at 36 weeks (he is clearly more confident in my body and my sanity than I am). Most infections travel up the birth canal and infect the baby once one’s waters have broken.  With Grace, though, my waters didn’t break and although my white blood cell count was elevated after she died, it was not high enough to suspect infection. How does one stop infections – especially the baby killing ones where in most cases moms don’t even know they’re carriers and experience no symptoms?

10.   Intrauterine growth restriction. Ok, so Grace was always in the normal range for everything, including estimated weights and lengths etc. And IUGR tends to repeat itself, so maybe this is not something to be concerned about. But this pregnancy is not Grace, it is different. And this particular pity party dictates that I am concerned about absolutely everything that can go wrong. Following careful monitoring, a schoolfriend’s son was born weighing in at less than 2kg at term after having been diagnosed with IUGR from 18 weeks. He is doing absolutely fine now. How and why is it that he can live, having been deprived of nutrients for more than half the pregnancy, but Grace, who never wanted for anything and weighed 3.3kg at term, did not?

11.   Kick-counting. Yep, you guessed it, I fear the signals from the growing bub letting me know that they are ok. Why? Because when Grace’s heart stopped, I still felt her kick. Three times to be precise. And to be honest, those kicks did not seem to be desperate or flailing – they felt like good, strong indications of life. Like Grace was saying “Don’t you worry about that non-existent heartbeat mom, I’m fine, see?” But she wasn’t fine – she was gone. I had always been conscious of Grace’s movements, but didn’t actively monitor them. One might even say that I took them for granted – most babies live, right? (a mantra BLMs know all too well). Not knowing whether any given movement will be the last – and the thought of anguishing over this for months - is enough to make me nauseous.

12.   Premature labour. Again, this is something where the likelihood of occurrence increases if it has happened before, and Grace was definitely not a preemie. My body didn’t want to give Grace up, and even when I began having severe contractions my water’s hadn’t broken and I wasn’t dilated. My obgyn later told me that my cervix hadn’t even begun to soften. So the poor thing was trying desperately to get out but couldn’t. Blaming myself a little? Sure.

A number of friends have gone into labour prematurely. One in particular ended up having an emergency cesarean at 24 weeks, and her son was born weighing just 1.2kg. He spent months in the NICU and is now doing well (mentally, he is 100 percent, but he has had to undergo numerous surgeries to treat growth abnormalities related to his prematurity).

13.   Somewhere between points 6 and 12, we may just reach the third trimester. Please don’t let us lose this one too.

14.   Umbilical cord accidents. There are various types of UCA’s and not all UC issues will result in death (more hope, really?) In many cases, UC issues can be detected on an ultrasound (this depends on the type of issue) and through conscientious monitoring babies are born alive. Not always, though. It’s possible for the little critter to appear perfect, with a good flow of fluid through the UC one day and to be gone the next. How fucking cruel.

My sister-in-law’s boyfriend lost his son due to a UC accident – the cord had wrapped tightly around his foot. He and his ex-wife went on to have two beautiful daughters who are now at university. Another colleague’s first son was born via cesarean section with the UC wrapped tightly around his neck. He made it and today is a quiet, observant 6 -year old negotiating his first year at school.

15.   More complications related to previous cesarean section – specifically placental and uterine rupture. Placental abruption can occur without warning any time, often repeats, and does not uniquely follow a cesarean although the risk is higher having had a cesarean. Uterine rupture is a particular risk for women attempting a VBAC (for me, then, hopefully I won’t have to worry so much about that one since a VBAC is definitely out of the question.)

16.   Kick-counts. See #11. Infection. See #9.

17.   Late-term stillbirth. What happened to Grace will never happen again – first I will never carry to 41 weeks again and second, I will never attempt a natural birth again. But I live in fear of realising that I haven’t felt the bub move, driving frantically to the hospital, hoping desperately that this is all a dream, that we haven’t lost another baby, but finding out that it has in fact happened and that they’re gone. Lightning doesn’t strike twice? Balls. Lightning can and does struck twice - not in exactly the same conditions nor in precisely the same place. But twice. Or more. No more naïveté here – this is a cold hard fact.

A few years ago a friend’s son was stillborn at 38.5 weeks. It was her last week at work and she was stressing about handing over accounts to a colleague to handle while she was on maternity leave. She left for work in the morning as always, listening to Coldplay on the car stereo. Only at about 11 am did she realise that she hadn’t felt her son’s movements at all, and that he hadn’t bopped along to the Coldplay cd as he usually did. She took herself off to the hospital and her worst fears were confirmed. Her son had died sometime during the previous night, and she gave birth to him naturally two days later. His skin was so fragile that she could barely touch him. The autopsy and other tests could not find any explanation for his death – ‘unexplained intrauterine demise in an otherwise healthy baby’. WTF.

Two months later she was pregnant again. At 7 weeks she experienced mild spotting. In the second trimester, she got bronchitis and required antibiotics. At 32 weeks she tripped and fell on paving. At 34 weeks she had a car accident. At 35 weeks she was admitted to hospital after a NST revealed an irregular heartbeat. 3 days of steroid injections and agonizing over kick-counting later, her second son was born via cesarean section. She says that hearing him wail was the best sound in the whole world.

18.   The birth. The weeks before. The day before. The NIGHT before. Driving off to the hospital, like we did with Grace, expecting that a few hours later we will get to meet our new addition. Knowing full well that we may not come home from the hospital with a live baby. Waiting to be prepped for a cesarean. I have very limited recollection of what was involved – after Grace died I was given a shot of morphine to try and reduce the pain from the contractions, which did not work at all, it just made me drowsy and incoherent. Eventually I was given a general anesthetic. So I have no idea what it would be like to be awake for the birth of a child (and, to be honest, I’m not sure quite how I will keep sanity, let alone my blood pressure down while watching the heartrate monitor, especially given that Grace’s heartrate was perfect one second and gone the next.)

19.   Birth complications. My friend’s daughter suffered from asphyxia during labour with the result that she was severely physically and mentally handicapped. She never developed as normal children would and at the age of 14 she couldn’t talk, feed herself, dress herself. She had the mental capabilities of a baby just a few weeks old.  She eventually died in 2010 after contracting the Coksackie virus (her younger brother had to go for heart surgery, and he picked up the virus at the hospital.)

20.   We missed something. Heart or other life-threatening congenital defects. I know of two mums whose babies died shortly after birth as a result of congenital heart defects that were not picked up in utero. Having to say goodbye. To another child. FUCK.

21.   We take our bub home. And sometime over the next few weeks/months he or she slips quietly away in their sleep, succumbing to SIDS. Again, I know of two families whose young babies have died from SIDS.

22.   Various pediatric illnesses. The bad ones. Tumors, leukemia. Battling to save a child that we had longed for but reaching the point where we are no longer praying "Save them" but are instead begging “Please, take them, end their suffering.” FUCK.

Ok, so you get the picture. There are an awful lot of things which I am fearful of, and I have even left a few off this list. And these are things which happen to good people, people I know, the best of people. Other things which don’t necessarily relate directly to having another child, but which I agonise over daily are losing my husband and losing my parents. I’m an only child and apart from Grace, my husband and parents mean more than anything to me.

As a parent you want so desperately to be able to protect your children from harm, and would do anything and everything in your power to keep them safe and healthy. With Grace, I feel robbed, not only of everything I had hoped to experience and share with her, but because we didn’t realise anything was wrong, and so were not given the chance to save her. We still don’t even know what happened. What they don’t tell you in the pregnancy and parenting books is that having children is not for sissies. You need to be prepared for the good and the bad, and sometimes you have to let them go.

How does this make me feel? I DETEST the fact that obtaining the one thing we want more than anything, a precious child to love, cuddle and cherish requires exposing our fragile hearts once again. With no assurances that things will be ok this time around.  It also doesn’t help that the Grim Reaper seems to have a particular affinity for our family and friends these days. It took me months to reconcile love and loss and find a speckle of hope. But I did, and as the months passed the speckle grew and we were so damn close! It’s so unnatural to have to let one’s child go. I find it so unbelievably hard to let anyone go. Am I going to be able to expose my raw, grief-ridden heart again? I really don’t know. I am so exhausted from wanting to believe in life when death just won’t let up.

I do realise that everything is not all the doom and gloom that I have made it out to be. Do I have friends and family with healthy children? YES. Did all of them have plain-sailing with their pregnancies and births? NO. Did they get through it? YES. Is the universe trying to persecute me? NO. Do I want anymore bad news and heartache? NO. Will I survive if yet another bad thing happens? YES (Consider me a magna cum laude PhD graduate - thesis topic: "Coping with life's hard knocks and other lessons you would never choose to learn"). But if the universe or random number generator or whatever's out there could just cut us some slack and land on the good stuff that would be hugely appreciated. THANKYOUVERYMUCH.