As soon as you find out that you’re going to have a child (or in my case, children) in NICU, both doctors and nurses will start preparing you. They will tell you that it will be a rollercoaster ride but, in all honesty, nothing can prepare you for the daunting road you are now forced to travel. This is my story of some of the highs and lows I have experienced thus far as a NICU mommy.
Our story begins long before the unexpectedly early birth, at my 12-week scan. This experience and the emotions we felt within this 40-minute appointment could be the summary of our story as a whole – both an extreme high and an extreme low.
Two things were as clear as day for the doctor who administered the ultrasound, the first being that there were twins. We should have been the happiest parents in the world, but before this had time to sink in, Dr Steyn told us there was a problem.
Baby A (Samuel) had PUVs (posterior urethral valves). In a nutshell, he was unable to drain urine from his bladder due to membranes causing blockages in his urethra. This also meant that he was unable to produce his own amniotic fluid, which in turn would mean his lungs wouldn’t be able to full develop. The doctor’s words still ring in my ears: “If you take two babies home, it will be a miracle”. She then advised us to go to a perinatologist, an obstetrician specialising in managing high-risk pregnancies.
Dr Pistorius, the perinatologist, confirmed Samuel’s condition. This was also how we found out that our precious twins were boys as because PUV is not known to occur in females. I missed out on the opportunity to have a gender reveal, but this was the last thing I was thinking about at that time.
We had three choices: to terminate the pregnancy; to let nature take its course (meaning that if it didn’t correct itself my son would only live for a few hours after birth), or to drain Samuel’s bladder. This would be done artificially by inserting a syringe through my womb into his bladder and testing the urine to see if his kidneys were working. If so, the doctor would go in and insert a stent to drain the bladder.
“At my 24-week check-up, I mentioned to my doctor that I thought I was leaking urine. This turned out to be amniotic fluid, and just like that my check-up turned into a check-in.”
We were given a weekend to discuss our options, but it didn’t take long for us to decide. I instantly knew that I wasn’t giving up on either of my boys and as we got into the car, Marnitz my fiancé also said: “I am not ready to give up on them” – so we chose the third option.
At our following appointment with Dr Pistorius, we asked him to test our baby’s urine to determine if they would be able to insert the stent. I had to see him three times so that he could void Samuel’s bladder by inserting a needle into my uterus and into Samuel’s bladder. Each time the needle was inserted, there was the risk of spontaneous miscarriage. After the third appointment, we were told that the test results were favourable and that they would be able to insert the stent.
We were thrilled! All my troubles melted away in that moment and we had all the hope in the world. We knew that there would be risks involved (there always are), but we had faith in God and the medical team that everything would turn out for the best. The procedure went well and both the gynae and specialist told us our next goal would be to reach week 25 of pregnancy. And just like that, my relief was traded for the haunting feeling that not all was well yet.
At my 24-week check-up, I mentioned to my doctor that I thought I was leaking urine. This turned out to be amniotic fluid, and just like that my check-up turned into a check-in. My gynae escorted me to the maternity ward and I could tell from his body language that it could be something serious. As I got onto the hospital bed, I knew this would be my nest until Samuel and Benjamin made their arrival.
My gynae Dr Du Buisson tasked my husband with going home and packing a hospital bag for me and I cancelled my plans to visit family and friends in Johannesburg – I was due to have my baby shower that weekend. There was no beating around the bush, and my usual cheerful and positive self was lost in the severity of the moment. I had to calm down and be grateful that they picked up the problem before I had left for Johannesburg and that there was still time to save both Samuel and Benjamin.
That bed felt like a prison that, in hindsight, I would’ve loved to spend more time in, even if it was just one more day. In our 26th week, Samuel went into distress, most likely due to an infection that had made its way to my uterus. I remember the doctor staring at the printout of the doppler almost hoping it would show different results, but it didn’t. We needed to go in, so that they could save the boys.
I asked the nurse to explain exactly what would happen during the C-section, as we were only due to discuss this part of birth preparation with Dr Du Buisson that weekend. We were also planning a tour to see the NICU because it was clear at that stage that we’d inevitably end up there; however, none of us thought it would be this soon. But some things you cannot choose or control, and you have to play the hand you’ve been dealt.
Our difficult journey didn’t end with the birth. After three months in NICU (94 days) I had only changed three nappies between my two boys and only held them both once for about five minutes each (if it was that long). This might seem insignificant, but these were huge milestones for me.
There was something wrong with both boys’ lungs and their blood tests were sent overseas, but we’re still waiting on the results. Pulmonologist Prof. Goussard suggested they go ahead and do a biopsy on Samuel’s lung – he was chosen because his lungs seemed to be the healthier of our two boys.
Their new set of doctors, Dr Van Eck and Dr O’Ryan, as well as Prof. Goussard explained that Samuel and Benjamin have a rare lung disease called pulmonary interstitial glycogenosis (P.I.G.). At this stage, all we can do is wait – wait for the results of the genetic tests and wait for our boys to get better. They’re being treated by means of ventilation, steroids and other medication in cycles or pulses, each lasting three months. The first pulse has been done; the next two will take place in NICU, so we still have a long way to go.
At this moment, our faith and patience are being tested to the extreme but even after all the lows I still have faith. I still have hope and I’m still waiting for that ultimate high of bringing my boys home, even if it means bringing them home with oxygen tanks or, even worse, machines to assist them with breathing.
I am holding out for my ultimate high!
Written by Siske van Niekerk.