Lightening Strikes Twice

Diagnosis: Spina Bifida

By A Mother

Two babies, two decisions

In 1997 I was pregnant with our third child. For whatever reason, I knew there was something wrong with the baby I was carrying. I asked for an ultrasound at 14 weeks, but it showed up nothing. Four weeks later, I went for my routine 18-week ultrasound. I was told that our baby had Spina Bifida, and to go home and ring our family'’s general practitioner to talk about a termination.

I was in shock. I had heard of Spina Bifida, but did not even know what it was. I told my husband, who also couldn’t believe it. I rang my doctor, who suggested we terminate and referred us to a specialist who said he did not believe in abortion/termination but would support us doing it.

My background was a religious one. I went to church every week. Because of my beliefs, I could not think of terminating. But we did have to consider it, otherwise we would not have been true to ourselves. After four weeks of deliberation, we told the doctors we could not terminate and that our baby would come into the world when he was due.

We had months of tears, which would turn into years of more: but also lots of joy and soul searching. He was born in August 1997 with a huge hole in his back. He is now seven years old and has had 11 different surgeries with still more to come. With our other children to care for, this puts a lot of strain on our family at times. It has also meant time out of work, affecting our financial stability. He has partial paralysis from the legs down, bone deformities, a v.p. shunt, is incontinent, suffers with pressure sores which turn into ulcers (these can take up to six months to heal) and has a type-one latex allergy. (Editors note: A type 1 latex allergy affects up to 65% of Spina Bifida patients and can cause anaphylaxis, a potentially life-threatening reaction.)

In November 1998, I became unexpectedly pregnant with our fourth child. I was in a panic. It was unplanned (even though we wanted more children) but I had been told to take folic acid because there was a chance we could have another baby with Spina Bifida. Therefore, I had not prepared myself for this pregnancy. I had ultrasounds with the specialist as before, and things looked okay this time. Our fourth baby was born in July of the same year: a healthy baby boy.

It was April 2000 when we uprooted our family and moved from the country to the city so that my husband could work at The Royal Children’s Hospital. We lived here for two years and towards the end of these years, we decided to have another baby. I started taking folic acid four months before I got pregnant. Due to our increased risk for Spina Bifida, I continued to take it three months into the pregnancy.

Being pregnant again and finally wanting a place of our own we decided to make the move back to the country. We had always rented, but figured with baby number five on the way it was time to look ahead. I had my eye on a piece of land which was up from the hospital and across from a school so we went to the bank for a loan and started building our house.

It was the day we were loading the truck to move when I received a phone call from a very dear friend who was pregnant with her second child. She began to tell me that he was dying. I was devastated, not that I knew exactly how she felt, but I did know what it was like to find out there was something wrong with your baby. I would not wish it on anyone. To have to make a decision, and wonder if it was the right one, is traumatic. Her 18-week ultrasound showed that the baby had no kidneys (Potter’s syndrome), so when she reached 40 weeks there would be no chance of survival. I Prayed that it could be me not her, I said to myself I could cope with this strain, I did not know if she could. I asked for her baby to be okay and for something to happen to me instead.

They had to decide to have him earlier due to the added strain on other organs as she got closer to her due date. They decided to wait until 29 weeks so if the doctors were somehow wrong there would be a higher chance for his survival. So, on July 3, 2002 they had their boy who lived only about one hour.

In my first trimester, my daughter came down with German measles, meaning that there was a possibility that this baby could be born with fetal anomalies. It was something we would not find out until after birth, and it was an added strain to this pregnancy.

I was due for my 18-week ultrasound and was nervous: We knew we had a higher chance having a child with a neural tube defect, but thought “it can’'t happen to us twice; we can’t be that unlucky.”

Lightning does strike twice. We saw it before they told us. We were having our second Spina Bifida baby. I cried because it in itself is a loss, you grieve for the “normal” baby that you will not have.

The following ultrasounds showed the baby’s condition was getting worse. We made the decision to have our baby early. There were other factors, including our other children and that our boy with S.B. was to have an operation at the same time that I was due. I told my husband if I was to do this that no one was to know until we had him. They knew he had S.B but that was it. I could not cope with that as well. My friend knew we were going to have him early but that was all.

I got them to take our case to the ethics committee because I said if I am to do this it will have to be past when it becomes a moral/legal issue with gestational weeks. This was because the cut off time was the birthday of our other child with S.B. and I could not have one and lose one with the same condition in the same week. If it were a different month even, I thought it would sit better in my head. The committee agreed.

I went into the hospital at the start of September and Joshua was born on the September 3. He lived for lived for 1.45 hours. It was horrible. I was in labor knowing I was ending my baby’s life.

Nothing will ever be the same in my life, how could it ever be?

The look on our other children’s faces when they came to see him and thought he was asleep, and were told he was dead, was absolutely awful. I did not comprehend what it would be like after the fact. I was so naive. The mental pain afterwards was excruciating and still is. I kept rubbing my tummy for what I was missing. I knew only a pregnancy: not a child that played, smiled and laughed.

I needed to be pregnant again, not to replace him but to help heal me and to help our other children. I did not want that to be their last experience of a baby. My husband had said “no more children” before we had Joshua, but he agreed to discuss it later. He could see my pain and felt his own and wanted us to have another. So we started trying for another. I had started taking folic acid pretty much the month after Joshua died, did not care if I had to take them for years; I was going to have them until when/if I got pregnant again.

After about five months we talked about another child and decided to try. It was a hard decision having another baby. We knew emotionally and for me physically, it would be hard.

At my 30th birthday, my husband announced to the family that I was pregnant. Most of the family was not happy. This began another episode of unhappy times. It was seven months after Joshua’s death and it was a shock for them all as I was just over 2 months pregnant by then. There was pressure from everywhere. People kept expressing their views and how they felt and would not let me express my views. I could not breathe.

Our sixth baby was born healthy in November 2004. He is gorgeous like our other children.


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