Written by Mystic on Wednesday, October 01, 2008
There are two distinct camps in the multiple pregnancy debate, is it better to have or to have not?
To many in the general population, multiple pregnancy resulting from infertility treatment sounds like a wonderful outcome, the "instant family" after years of involuntary childlessness. This is reinforced by magazine articles and television programmes in which readers and viewers are invited to marvel at the rows of beds, shoes, school lunches etc., in families coping with raising triplets, quads, quintuplets or more.
As an IVF embryologist, I fell into this category. After the couple had a positive pregnancy test it was not common to hear any more about them. In the absence of any further information, it was normal to assume that things were running smoothly, and that the worst the parents would have to cope with, would be a few sleepless nights after the children were born. But over the past ten or so years, I have come to understand exactly what a multiple pregnancy means to the family.
The pregnancy
I became pregnant when I was 27 years old. I had just lost a blighted ovum pregnancy and then conceived naturally in the subsequent cycle. This second pregnancy was a quadruplet implantation, with one embryo lost at 5 weeks' gestation (although this was not accompanied by any bleeding). The ultrasound examination showed tissue in the uterus, although evidence of a fetal heart was not conclusive.
7 weeks
A second ultrasound examination at 7 weeks gestation showed 3 fetal hearts, with two quite close together. Another ultrasound examination at 10 weeks gestation showed three separate sacs, although one was much larger than the other two.
16 weeks
At 16 weeks gestation, biophysical profiles of all the fetuses were made by ultrasound examination and showed that two of the fetuses were developing normally, while the third was smaller.
20 weeks
At 20 weeks gestation, I developed pregnancy induced hypertension and was placed on bed rest. There was an unequal distribution of amniotic fluid in the fetal sacs - one had a very high volume of fluid, while the others had very low volumes. This made it impossible to treat the condition medically, since treatment to increase or decrease the fluid volumes would cause problems for the others.
24 weeks
At 24 weeks gestation, I was spilling protein in my urine, my kidneys weren't functioning properly so I was accumulating fluid, and I had extremely high blood pressure. I was admitted to hospital because the doctors were concerned about premature labour. After a couple of days, my condition had stabilised, but there were still very unequal amounts of amniotic fluid. The only way to even up the amount of fluid was to physically remove some from the large sac. This was done trans-abdominally using an amniocentesis needle attached to a 60 ml syringe. A total of 1.3 litres of fluid was removed, 60 ml at a time (quite a painful procedure because the layers of tissue were moving relative to one another as the amount of fluid decreased, but the needle was left in place all the time to reduce the risk to the baby).
26 weeks
At 26 weeks gestation, another ultrasound biophysical profile of the babies was ordered. The third triplet showed an abnormal blood flow that could have been due to a heart defect and we had to face the possibility that she might not survive. Because of the uncertain outcome, we were asked to decide whether to continue the pregnancy or to deliver at 26 weeks to allow her to be operated on. There was no evidence that we could improve her prognosis by surgery (since nobody knew exactly what, if anything, was wrong), and we felt that the risk to the other babies' health was too great when there was such an uncertain outcome. We decided to continue with the pregnancy.
27 weeks
By 27 weeks gestation, my blood pressure was controlled, my kidneys were working again and I had lost the fluid that had accumulated in my tissues. The fetuses were growing well. I "saw" them most days during the routine ultrasound, and had started referring to them by name. The medical team was pleased with our progress, and foresaw no problems.
28 weeks
At 28 weeks gestation, the Monday morning ultrasound showed that the third triplet's heart had stopped beating. Because of the fused placenta, the babies had to be delivered by emergency Caesarean - since they were now at risk.
The delivery
There were 14 people in the delivery room (hardly an intimate and moving experience!). Baby 1 (Caitlin) weighed 1100g and had to be resuscitated, Baby 2 (Rebecca) was stillborn. She weighed 800g. Baby 3 (Sara) weighed 890g and was doing reasonably well. All of the babies were taken away immediately.
Our first joint parental decision was to allow Sara and Caitlin to be given lung surfactant - fortunately the decision to end the drug trials had been made 2 hours earlier!
Rebecca
The following morning, I had to make my first sole parental decision I had to sign the autopsy release form for Rebecca. The enormity of trying to come to terms with the loss of a child as well as having to understand the challenges faced by the surviving babies, at the same time I was recovering from surgery, is too painful and too hard to describe.
In that first week, we had to arrange for Rebecca's funeral while at the same time I had to start expressing breast milk for Caitlin and Sara. It was a week of sharp contrasts, pain and cofusion, instead of joy and happiness at the birth of three healthy babies.
Caitlin & Sara
During that week, Caitlin had to be given another drug to close the hole in her heart. The surfactant treatment worked very well and both Sara and Caitlin were breathing on their own (ie they didn't need ventilators) within a couple of days, although they still required oxygen treatment. In the following week, Sara was doing very well, and there was talk of moving her out of the intensive care unit. Meanwhile, part of Caitlin's gut had died due to lack of oxygen. This is a life-threatening condition. In other cases it requires surgery to remove the dead portion of the bowel. Rebecca's funeral was held that week. Caitlin recovered and did not require surgery. Her health improved quite quickly, and she was moved into the intermediate part of the intensive care unit.
Meanwhile, Sara had contracted viral pneumonia and her lung had collapsed. She had to be put back on the ventilator. On the same day, I was allowed to hold Caitlin for the first time. She was so small that her head rested in the crook of my elbow and her feet were at the end of my palm. Caitlin continued to do well and was moved to the special care nursery just to grow. She learned to suck and I could breastfeed her. She still had some lung damage and needed extra oxygen.
Sara
Sara was still very ill and her lung damage was worsening. The drugs she was on caused her a lot more damage and in the end, every system was affected. She was being given 100% oxygen but her levels were below 80% (they should be 85-95%). She stayed this way for weeks, until finally she crashed. Her oxygen levels were down to 28% and nothing was helping her. She was still in a humidicrib, and I still hadn't held her. I made a scene in the intensive care unit about how they couldn't let her die because they hadn't let me hold her. I was escorted out of the NICU. The following day, Sara was still alive but her oxygen levels were still extremely low, around 36%. The staff had decided that it couldn't hurt for me to hold her.
Everyone in the NICU knew what was happening and people came running from everywhere with tissues when they put Sara in my arms. As I held Sara, the oxygen saturation monitor alarmed. It was reading 96%. Sara improved slowly, but her oxygen saturation levels stayed relatively low (around 70%) for the next few weeks. The doctors didn't expect her to improve, and couldn't give us a prognosis - although they told us that nobody who had been that sick had ever survived. That week, the nurses put Caitlin and Sara together and took photographs. They thought it might be the only chance we would have to see them together.
Coping with critically ill children
Finally, after 10 weeks, Caitlin was to be released from hospital. The day before Caitlin was to come home, the medical staff called us in for a conference. They told us that Sara was gravely ill, that they had evidence that she had sustained brain damage. They said that she was constantly in pain and that she would never have a good day in her life. They then asked us to support their suggestion that they withdraw care and allow her to die. This was too hard to face, and we asked for their personal rather than professional advice. We decided to put off the decision for another week.
During that week, Sara was treated with high doses of steroids, and she improved dramatically. Caitlin had come home on schedule, and she still needed oxygen. The day that Caitlin came off oxygen supplementation was the same day that Sara came off the ventilator. Sara had to stay in hospital for another 2 months, and she started to grow, although her lung damage was extreme. She was discharged from hospital when she was 5 months old. She was home for 2 days before she had to be rushed back to hospital with breathing difficulties. She ended up staying in hospital for 3 months, and she had surgery (after she got to 5.5 lbs) to stop her from vomiting constantly. A gastrostomy tube was also inserted through her stomach wall so that she could be tube fed when she was too sick to manage eating
When she was discharged from hospital this time, we had to give her nebulised drugs every 3 hours, followed by chest physiotherapy. The treatment that had kept her alive had taken away all the hairs in her lungs, so she couldn't get rid of the mucus on her own. She also had to be fed small amounts of high calorie formula via her g-tube every 3 hours, and she couldn't have been fed less than an hour before chest physio. She also had to be given drugs every three hours around the clock and she was fed via her g-tube overnight while she slept.
We had to be very organised about Sara's care and we devised lots of systems to make sure that she was given the right drugs and treatment at the right time. For example, when Sara was in bed at night she had her oxygen tubing as well as a feed line going into her stomach. This meant that she had two lengths of tubing running through her bed and there was a risk that she could get them tangled around her throat. We ended up putting both tubes inside her sleeper pyjamas and bringing them out at her foot, because then she would have to do somersaults to get the tubes around her neck.
Another problem was that she had to have drugs given to her in her g-tube at 8am, 11am, 2pm, 5pm, 8pm, 11pm, 2am and 5am. Some of these drugs were quite dangerous so we had to make sure that we weren't going to make a mistake in the middle of the night by giving the wrong dose or giving it at the wrong time, since she didn't get the same drugs at each time. Of a night, I'd give Sara her 10:30pm Ventolin etc., then chest physiotherapy, then put her back to bed and hook her up to the overnight feeding bag. There was a peristaltic pump which passed the formula into her stomach at a fixed rate. When the bag was empty, the pump would alarm - we set the flow rate so that the alarm would go off at 5am, so that I could get up, switch it off, give Sara her 5am drugs and then go back to bed. We had to work it so that I did the 11pm and 5am shift and my husband did the 2am shift, so that he could have 2 stretches of good sleep, since he was the one earning the money of a day.
The guilt and despair involved with having critically ill children is extreme, and certainly outweighs any perceived advantage of just having to have one pregnancy to complete a family.
Meanwhile, Caitlin was doing very well and we had to try to give her as normal a childhood as possible. This level of care continued for 2 years, with Sara in and out of hospital due to lung problems. At 2 years and 3 months, Sara was well enough to be weaned off supplementary oxygen and most of her drugs. She was unable to walk, and had developed an oral aversion, meaning that she didn't like eating. We then had another 2 years of intensive therapy (physiotherapy, occupational therapy, speech therapy) to teach her how to walk, how to move food around in her mouth, and to give her a sense of herself. The breakthrough with her eating was chocolate. She surprised us all by eating an Easter egg. It took her until she was 6 years old before she was confident in chewing and moving food around in her mouth. The girls continued to grow and Sara started to outgrow all of her problems.
Now we have two 10-year olds. They are both generally healthy and intelligent children. However, it took five years of virtually 24 hour nursing and caring to get us here. From my family's experiences, I could not recommend multiple pregnancy to anyone. The guilt and despair involved with having critically ill children is extreme, and certainly outweighs any perceived advantage of just having to have one pregnancy to complete a family. Finally, I would just like to say that we begrudge nothing that we have had to do but please remember my family's trials and hurdles when thinking about the 'rightness' of the "instant family" that multiple pregnancy brings.
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