My Womb Betrayed Me but my Son is Wonderful

I used to say that things in life happen for a reason. After my water broke at 19 weeks gestation and my son was born premature, I stopped using that phrase.

We are Lesley and Bruce Donaldson, and our son Torran was born at Mt. Sinai in March of 2008. His early birth is a result of my oligohydramnios, a condition where there is a lack of amniotic fluid. It happened when my water broke at 19 weeks of pregnancy. The oligohydramnios was likely caused by the marginal placental abruption (subchorionic haemorrhage) with bleeding that I’d experienced since 6 weeks gestation. Recently, I found out that I had a uterine infection which caused the abruption and early delivery. I never even felt sick.

Since we could manage financially, I had been off work since the heavy bleeding started at 9 weeks. It wasn’t strict bed rest at that time, because there was little that lying in bed could do to help the situation. However, it was frustrating nonetheless because I was essentially house bound. However, after my water broke, despite what the doctors were advising, I stayed in bed.

I wanted to be sure that I was doing everything I could possibly do to give my baby a fighting chance. That included drinking four litres of water a day! Not that I could prove that it helped, mind you. I was given intravenous antibiotics to prevent infection. After a consultation with a Mt. Sinai high risk obstetrician, I was admitted at 24 weeks gestation. In the hospital, I was also given an injection of steroids to help my baby’s lung development.

A lack of amniotic fluid at 19 weeks interferes with fetal lung development. There isn’t enough fluid for a fetus to practice breathing in the womb. We were told by several doctors that either our baby would not be able to breathe and die, he could take a breath and die or they could attempt to intubate him (put him on a breathing machine) and he could die. There was a very slim chance that he would be able to maintain breathing on his own. In addition, he was at risk for premature delivery. If that happened before 24 weeks gestation, we would lose him.

For first time parents, this was very grim news indeed. The option of terminating my pregnancy, for these reasons, was presented to us several times, but we could not let our child go. We spent many hours crying over the unknown future of our unborn child. Although Torran was conceived naturally, we had already experienced stress during our fertility attempts which did incorporate the first stages of medical intervention.

Luckily, Torran remained in the womb until 26 weeks and 6 days. My labour actually started the day before during a snow storm which kept Bruce away from the hospital. Since I’d had a similar episode of bleeding and uterine cramping in the previous week, I did not realize I was in labour. The pains settled down only to return in full force the following evening – thankfully when Bruce was visiting!

The night Torran was born he breathed by himself for four minutes before his oxygenation status started to fail. His mewling weak cry when he rushed into the world was the most beautiful sound that Bruce and I had ever heard. Both of us cried with joy. He weighed in at a whopping 1040 grams (2.5 lbs). He was actually born 30 minutes into his 27^th week, which we desperately tried to hang on to. The older the babies are when they are born, we were told, the better they generally fare. But the doctors labelled him a “26 weeker”, and so we eventually conformed.

We accepted the fact that that Torran would be in the NICU to support his breathing and development before he was born. Mikiya, a young girl in Niagara region, went through her own NICU experience after oligohydramnios. She and her mother Shelley were our constant inspiration.

But nothing could prepare us for the next few months that were to become the worst days of our lives.

At first, being a nurse, I was sheltering myself from the shock. Where I previously did not advertise the fact to the prenatal nurses, I now let it be known that Nurse Mum was on duty. I buried myself in a 10 hour a day NICU routine which included changing Torran’s diaper, taking his temperature under his arm and holding the syringe as 1mL of breast milk slipped though the tube in his nose into his stomach. Mt. Sinai allowed parents to attend their daily rounds, which I did religiously for three weeks, explaining all the medical terminology to my husband to help him understand.

It was foolish of us to think that we could be prepared, medical training or no. Two days after Torran was born, we were told he had bleeding in his brain. He required two early blood transfusions and there were indications that he was still bleeding. On his 5^th day of life, we received the news that the bleeds had worsened to the two worst levels of a possible four. He received a third transfusion.

The ultrasound indicated the worst bleeding, which damaged his brain tissue directly, would have a greater than 50% chance of paralysis on his left side, the extend of which could not be predicted or prevented. This was the first time we were asked if we wanted to consider pulling Torran’s life support. Sadly, it would not be the last.

The following morning, after we resigned ourselves to waiting to see what life had to offer our little man, putting on a brave front in accepting the possibility of a disabled child, we arrived at the hospital to find out that he had become gravely ill during the night. He was septic with an unknown infection. His blood pressure could not maintain itself and if left untreated with critical medications, he would die. And we had never held him.

Less than 24 hours after our first conversation with the medical team about the bleeding in Torran’s brain, the option to take him off of the ventilator was again presented to us. This time, it was explained, the severe lack of oxygen to his brain and the unknown infection could cause unforeseen cognitive delay or disability.

Given my nursing background, I knew that if the medications he was receiving failed to maintain his blood pressure, there was no other option for him. He would die. This was the most horrible day and night of our lives. Our families and friends suffered with us at a distance, some as far away as Britain and South Africa.

It is an event that will stay with us forever, even though Torran, our impatient little fighter, survived.

But our struggles were by no means over. Torran remained ventilated for 8 weeks. Sometimes it seemed as though he was never going to breathe on his own. We weren’t able to hold him for very long because of the tube in his nose and the intravenous lines in his navel and limbs. One of his primary care nurses initiated a sixty second cuddle, with a respiratory therapist mechanically moving air into and out of his lungs, whilst they changed the incubator each week.

There were calmer moments, as we moved into a routine that revolved around his medical care. Both Bruce and I would spend time in the NICU each day, Bruce as his work schedule allowed him. We became such a familiar fixture in the unit that we were asked to be part of a commercial for the hospital’s annual fundraiser.

The day of the filming mirrored the unexpected and sudden ups and downs that parents in the NICU experience. One moment we’re filming the commercial and having a good laugh with each other at how often we’re being made to have a loving parental kiss at Torran’s bedside for the multiple takes for editing the commercial; the next I find out inadvertently that Torran’s bleeding in his head has lead to hydrocephalus and I’m sobbing on the subway ride home without tissues.

That diagnosis was our third offer of removing Torran’s life support. Hydrocephalus is the retention of fluid in the brain by some kind of blockage, in this case the clotting blood. If uncorrected surgically, he would suffer severe neurological repercussions, eventually interfering with the basic functions of life. Surgically corrected, he potentially faced a lifetime of neurological sequalea and surgeries.

After this discussion, we told the doctors that they did not have to approach us anymore about Torran’s life support. We had committed ourselves to letting him guide us on his pathway.

Five weeks after he was born, the next big bump in the road arrived. Torran started to have more frequent apnea spells than usual. He’d stop breathing and his oxygen level would drop, requiring nursing and/or respiratory therapist intervention to get him going again. The NICU docs thought it was because of the progressive swelling in his brain. The paediatric neurosurgeon from Sick Kids hospital disagreed.

On one routine assessment, a NICU nurse heard a heart murmur, the tell tale sign of a hole in the heart that hadn’t closed. Then it disappeared, only to return a day later. Imaging confirmed the diagnosis and Torran was lined up for heart surgery to correct a large 4mm patent ductus arteriosus (PDA). Although he was much older than premature babies usually are when treated with medication, the paediatric cardiac surgeon from SCH advised indomethacin treatment.

Torran received one dose and had a bad reaction to it. Although he only got it once, that dose kick started the PDA closure process. During his pre-surgical assessment, consent signed and parents ready for another “life support” discussion this time at the NICU at Sick Kids, we found out his PDA had not only closed by over half but the blood flow to his other organs was satisfactory. The surgeon was in agreement with us to hold off on surgery and let him coast it out. What a relief!

After one failed attempt, he was finally graduated to 6 weeks of biphasic CPAP, where the machine assisted his breathing abilities.. What a joy it was to finally be able to hold him, skin to skin, even though the hiss of the oxygen was less than serene. At a late 36 weeks, we even tried to get him to latch for non-nutritive sucking whilst on the CPAP.

Throughout our NICU stay, Torran experienced many of the common difficulties of a baby’s stay in the NICU, as well as some of the more rare complications. Torran was able to tolerate low flow oxygen before his hydrocephalus shunt surgery.

Torran had his surgery at Sick Kids when he was two days of corrected age. The first post-surgical day pushed our coping abilities to the limit, or so we thought. He responded very well to getting the 200grams of excess fluid off his brain, and within two weeks we were preparing to take him home.

The night before we were supposed to take him home, he developed an infection in his shunt. He became feverish, unwell and his oxygen level was suffering again. Although stabilized by antibiotics later in the day, Torran was transferred to Sick Kids hospital to have the shunt removed.

We stayed there for another month dealing with complications related to his hydrocephalus, surgery and infection. The neurosurgeon told us that any infection in the brain could cause damage which could lead to impairment or disability.

Our little man had come so far and faced so many challenges; we weren’t sure how much more we could ask of him.

On July 19^th, four months and nine days after he was born (one month 9 days corrected), Torran finally came home.

He would have subsequent surgeries related to his hydrocephalus in August and October that year, and be hospitalized again with a fever in September. Because his head was the size of a one year old’s when he was only one month old (corrected) and since he spent so much time in hospital he had physical delays in development. His eyesight and hearing were also impaired. He had high blood pressure, a clot in his liver and three holes in his heart upon discharge. During our stay at Sick Kids we uncovered a probably genetic blood disorder that makes him at risk for infections. All of these problems required further investigations, clinic appointments, blood tests, medications and therapy.

Mind you, although it took him three weeks to clear his meconium and a further five weeks to get to full feeds (by tube), he progressed well with his oral intake and he’s never looked back since (he eats like a pig!).

And the little boy who was supposed to breathe and die never once had a problem with his lungs once he got home.

Torran survived the devastating and sometimes life-threatening events of his early birth and hospitalization. Today he is a lively lad with a terrific personality. Although his hearing did start to improve significantly, his recent hearing tests showed mild to moderate hearing loss. He is being fitted for hearing aids this month. His vision, once very poor, seems fine. He “outgrew” his high blood pressure. With intense physiotherapy, occupational and developmental therapy, he is reaching his infant milestones. However, he has been recently diagnosed with mild cerebral palsy. It's a condition where the brain cannot control his muscles properly. He will likely have to wear leg braces for life in order to walk with a steady gait. We will watch the clot in his liver annually to make sure it doesn't become portal vein hypertension (a serious medical problem which could kill him). The other medical problems and his cognitive development we’re keeping a very close eye on.

We still won’t say that things happen for a reason, as we can’t see why this happened to our innocent son, or any unborn NICU baby for that matter. But I will say this much, we are so happy to have our son with us today despite the terrible road it took to get here.