Prenatal care and testing

Recent posts over at Pinwheels and Terrible Palsy, made me think again about prenatal testing.

Although I’m not denying that prenatal care is important, I’ve always seen it as more than a monthly visit to the doctor or taking your prenatal supplements. I feel that it reflects your general attitude about health.

If you are generally a healthy person, conscious of eating well, drinking enough water, steering clear of harmful things and you have a healthy attitude – namely that pregnancy is a natural state and should be approached with common sense, then I believe that you barely need monthly check-ups.

And even if you want to keep an eye on things, you can. Blood pressure monitors are available everywhere, urine sticks will tell you quickly whether you have an infection or proteine spillage or sugar in your urine and after 20 weeks you can even listen to your baby’s heart beat with an ordinary stethoscope. (If you want, you can rent a Doppler and listen to the heartbeat from the beginning.) If you know what you should notice and look out for, you can actually be a better caregiver than any doctor. Because you know yourself far better than any doctor and because you have a bond with the baby you are carrying from the start.

I am also wary of ultrasound scans – and Dopplers to some extent. They have only been in existence since the 80s and so the oldest group of children who have been exposed to them are only in their 20s – too early to really tell their effects. I have read a few blood-chilling accounts about the safety of ultrasound scans. Look, everything in moderation. If a scan is necessary, have it. But we have OBs in South Africa who will scan every time you visit them.

I feel that the doctor’s (particularly OB’s) place is if something goes wrong. And let’s face it: Things do go wrong. Some of the people who read this blog have had extreme prematurity, miscarriages, neonatal death, bed-rest, bleeding and all sorts of other things to deal with. I cannot begin to imagine what they have gone through – both my pregnancies were extremely healthy, carried to full term with big strong babies over 4kg. The fact that Loren has CP is due to not having the right care at a moment of slight crisis. His brain injury is a tragedy precisely because all the odds were on his side and I’ll feel responsible forever.

I can imagine that a mother who has gone through a crisis like the ones I have described above would be extra careful and seeking extra reassurance in any subsequent pregnancies. And that is natural and fine. That is what the doctors are there for. There are no guarantees – a regular check-up does not guarantee you a healthy and live baby, but then you know you’ve done everything in your power to be informed.

Information is really what this post is about.

I believe that there are times when being informed simply for the sake of information, is dangerous.

When I fell pregnant with Marco, I had been battling infertility for four years. I was terrified of losing him. I went for every scan, every checkup and became fanatical at avoiding anything that could harm him. But the turning point came when I was simply informed at my 3 months checkup: Today we are doing a Nuchal fold scan and I’m sending you for screening tests for genetic abnormalities. I obediently went, but I felt unhappy about it.

I realized that none of the consequences of finding out was discussed. Delving deeper, I knew I would be extremely hesitant to abort a fetus because of abnormalities. If I had to be expecting a child with disabilities, I would still want him and would still love him. Finding out that there MAY be a problem – because that is what screening tests are for – I would then have to opt for more invasive testing. And if I opt not to after being told there MIGHT be a problem, the rest of the pregnancy would probably be a tension-filled affair.

With Loren, I refused all prenatal tests. And prenatal tests could not predict that he would inhale amniotic fluid at birth. Clear and simple.

While fully understanding that other people may want to find out simply for the sake of being able to prepare themselves psychologically and practically, I also know myself. I know I would cope better with any problems while I have a real little person in front of me, needing me. I don’t think anything can prepare you well enough in advance. In a crisis, you learn because you must.

Very few problems can be “fixed” or even improved prenatally. Knowing about them is not really going to make a difference to the outcome. And sometimes even extremely serious problems cannot be picked up beforehand. So, the parents have a false sense of security and the shock is even greater in a case like this.

I am extremely aware that other people may have vastly different views. Especially within the community of parents with special needs children, views can become very complicated. And my pet hate is when parents who are already stressed beyond imagination are advised by caregivers who have no inkling of what it is to raise a disabled child.

Most doctors around here seem to have a Humanistic view of the whole issue of resuscitation, for example. I have never had exposure to their views on genetic or other abnormalities, but I have a very good imagination… I’m no Humanist and I’m also a mother and so I find their view extremely distressing when they try and apply it to a child I love with all of my heart. But this is probably a post for another time.

The question is: Where to from here?

Dirk wanted me to go for prenatal check-ups almost as soon as he heard I’m pregnant. As it turned out, we could only get an appointment at the doctor who seem most suitable for when I’m around 17 weeks pregnant. Which is fine. And I’ll go to these checkups even though I have my doubts about them.

Am I going to refuse prenatal testing? Yes. Even though I know that having another special needs child will be extremely difficult. I’m reasonably sure I’m going to meet with resistance from Dirk on this, but maybe he will surprise me. Who knows?

What are your views about prenatal checkups and prenatal testing? And please, if you differ from me, don’t be afraid to voice it. I need a balanced view.

Images of the festive season

Thorny

Stepping into the new year, was a bit like landing barefoot in a patch of thorns…

On New Year’s night Anna – the lady who looks after Loren during the day – let us know via her brother that she had a series of “fits” that afternoon. She suffered from memory loss and could not walk. Her mother and siblings were very worried. So were we.

Anna was in a bus accident a number of years ago and must have suffered a head injury. Ever since the accident she has had these spells or attacks and memory loss thereafter.

I was due to start work on the 2nd, but our lack of a Plan B (the story of our lives?) necessitated me staying home for the next four days while Anna recuperated slowly. On Saturday night she let us know that she still is not well enough for work.

My wonderful mother offered to travel the 300 km to us as help us out today and tomorrow. I have a lot of very urgent work to finish before my three-week break and will really have to put in some hours today and tomorrow.

On Wednesday we travel to Johannesburg (about 600 km from here) to attend our six-monthly ABR assessment and training. Anna may or may not be able to accompany us – I’ve resigned myself to either. Since the brunt of the therapy hours rest squarely on her shoulders, it would of course be better if she could receive first-hand training, but she has the concept of ABR down well and I should be able to convey the new exercises to her if she cannot go. It is more important that she gets well.

We’ll stay with an aunt of mine during the ABR training. I am so grateful for their hospitality. Dirk’s sister offered to look after Marco while we do ABR – fortunately only two hours per day. And next week-end we get to spend a night with my sister.

Marco is very excited at the prospect of the whole trip and asks me constantly to repeat the story of where we are going and what we are going to do and who we are going to see.

After that, we have our new flooring put in and Dirk will drop us three red-heads off at my parent’s place for three weeks. He’ll join us during week-ends. On the one hand, I am looking forward to spending the time with my parents. But we sure are going to miss Dirk.

Loren has had a sinus infection and just as I thought we’d won, he developed tonsillitis. AARGH! He has had so much antibiotic that it started affecting his digestive system despite the use of probiotics and I’ve simply stopped giving it to him – after a reasonable time and in consultation with the doctor, of course. But he is uncomfortable and unhappy with the sore throat. I’m giving him homeopathic remedies and rinsing his mouth and sinuses with a mixture of salt water, bicarb and goldenseal. I’m the most unpopular mother on the face of this earth! But it seems to be helping – slowly!

As you may have noticed, I’m using our real names now. Mine is Nelba – hence the nickname Ellie (from school days). I’ve just got to find a way of posting as myself – you’ll see I’m posting as Vygie (a South African flower that does remarkably well on very little water and displays its jewel-bright colours in almost desert areas) as it is the name I’ve used for my Afrikaans blog http://windpompevygies.wordpress.com

And then, our big news: I am pregnant again. We have known that we would like a third child from the start, but the ideal would probably have been to wait a little bit longer. When I started suspecting I might be pregnant, I felt very ambivalent. Eventually I plucked up enough courage to do a home test and my joy at seeing it turn positive, made me realize that I really really wanted this baby. It took me day or so to confess to Dirk. He shyly admitted that he was wondering what was up but was too afraid to ask. He is also very glad. After yearning for children for so long and after almost losing Loren, neither of us will ever take our children and the privilege they are for granted.

We are not getting younger. I’ll be 37 in June and Dirk is 45 this February. We never wanted a huge gap between our children – the oldest must still be able to relate to the youngest. So, maybe our timing was not too bad…

We kept it quiet for a while, just enjoying the thought by ourselves. And now (at about 13 weeks) we are finally starting to tell people. We have had a few lifted eyebrows and people echoing our own uncertainly about the practicalities, but from the community of other parents with special kids, we have had only encouragement. Most people have coped remarkably well and feel that all the siblings have benefited from having a close and loving family surrounding them.

Then there is – what used to be just an aversion to allopathic medicine and reservations about forced C-sections – which has now turned into a full-blown phobia. I have enlisted the help of a psychologist and I’m searching for a very understanding OB and praying that I’ll find one. I’m also praying that healing will take place for both me and Dirk and that neither of us will be robbed of the joys of this pregnancy, birth and new little person through fear. And that I’ll do what is best for all of us – especially this baby. I’ll be using this blog to help me work through the process and I’m thanking all of you in advance for reading and helping me through sharing your thoughts.