Cassandra, South Africa

My husband and I got married on the 10th of December 2010 on a beautiful tropical island. It was an incredible day and we were so excited for our future together. We wanted children, but not at that point in our lives. We wanted to wait at least a year or two before taking that step.  Six months later, we were surprised with a positive pregnancy test.  I was in shock and couldn’t believe it. We had our first appointment at eight weeks. I can still remember the excitement and nerves that day. We heard the heartbeat and I fell head over heels in love with our Jellybean.  I had never experienced that kind of love before. It was an unconditional love and I would have done anything for our baby. Her due date was April 4th, 2012. We passed the NT scan with flying colours and even turned down the blood tests. Nothing could go wrong. We were in this bubble of total happiness and felt so blessed. We found out she was a girl and soon after named her Madison- Lee.  We bought all the pink girly stuff; clothes, a cot, a pram. We decided on owls as her nursery theme. We became so attached to this tiny person. She loved it when we played loud music. She would kick the whole time. Another favourite moment of ours was when my husband came home, he would kiss her hello and she would immediately start kicking. She knew he was her daddy.

On the 3rd of December, a Saturday, we had our 20 week ultrasound. I did not know at the time it was called an anatomy scan, where they check all the organs. We thought it was another opportunity to see our daughter.  I was already 22 weeks because they couldn’t get us in sooner and we were super excited. We invited family members to come with us.  The appointment started out very cheerful and we were all oohing and aaahing over her.  The technician became quiet.  My heart sank and I just knew something was wrong.  She kept measuring the same places over and over. Eventually, she pointed out the cerebellum and said that it shouldn’t be a banana shape. She kept going over the spine, again and again and again. She thought she saw a hole in the spine. But she couldn’t get a proper look. She also showed us the lemon sign typical of spina bifida patients, where the frontal bones of the skull are scalloped into the shape of a lemon. At this point my heart was racing and I began shaking. I asked “What does it all mean?”  It was spina bifida.  My heart cracked and broke into a thousand pieces. That moment and those feelings cannot be put into words. There just aren’t any. In a few seconds, my life had changed and I knew I would never be the same again. I lay on the table and sobbed. The technician gave us one picture of Madison-Lee’s tiny feet. She kept the rest. She arranged for us to get another opinion on the following Monday.  The rest of the weekend was a blur. All I did was cry and sleep. I cried myself to sleep. I didn’t want to be awake. I could actually feel how broken my heart was. It was a physical pain.

We got a second opinion on Monday. Dr. M was so caring, gentle, and compassionate. He wanted me to see a Maternal Fetal Specialist as their equipment is more advanced and we would get a definite answer about all the areas that they were concerned about. My midwife arranged a third opinion for us on the same day. We got to see Madison- Lee in 3D. She was so beautiful.

We would have to wait two weeks to see the specialist. I don’t remember much about those two weeks. I know I cried every day, for most the day. I didn’t know a person could shed so many tears. My husband was incredible. He was my rock. I will forever be grateful for what he did for me during that time and afterwards.  I am one lucky lady and God really blessed me with my knight in shining armour. My mom was my other hero. She was by my side day and night. She became the lioness of the household, protecting her injured cub. Those two weeks dragged by. I developed a stress induced rash that covered me from head to toe. I was falling apart both emotionally and physically. Our first wedding anniversary was on the 10th. We didn’t even celebrate. We couldn’t celebrate during such a heart breaking time in our lives.

We saw the specialist and he confirmed the spina bifida, the beginning stages of hydrocephalus (which would have advanced as the pregnancy progressed) and Arnold Chiari Malformation. The first thing he said was “There is a big problem here.” Those words will haunt me forever. We wondered why she was kicking and he explained that because she is still in utero and surrounded by fluid, there isn’t any gravity. When she is born, she would lose mobility. The specialist sent us home to make a decision. We could either carry Madison-Lee to term or we could terminate the pregnancy.  How could we much such a decision?

This kind of decision is not made lightly. We discussed the pros and cons of both carrying to term and terminating in detail. We had to look at each side from a financial, emotional, and physical point of view. We had to consider our future children. Was it fair to them?  We had to think about who would look after her when we got old or if something bad happened? We had to consider the numerous surgeries in her first year of life. She would have had to have surgery within the first 24 hours of being born to close the lesion. She would need a shunt. She would need to be monitored yearly for problems associated with spina bifida. Was all of that fair to her? We also had to take into account the divorce rate of couples with a disabled child. The statistics don’t lie. We were a young, recently married couple.  Would our marriage survive? We were only just getting on our feet in terms of our finances. Would we be able to provide everything that she would need? Sadly, the answer was no.

We made the decision to terminate. No one ever thinks they would make this decision. I didn’t even know things like this happened.  My husband and mom made all the arrangements. We decided to go through Dr. M. I sat on the couch while everyone ran around me making plans. I sat and stared. I kept thinking “This isn’t happening. This isn’t real.” But it was. I was going to lose my precious baby.

We went to the hospital and we were taken to the maternity ward. We got a private ward at least. It was awful hearing women giving birth around me, and then hearing the babies’ first screams. My heart broke every time that happened.  Here they were experiencing the most wonderful gift of life and then there was me, in the other room, experiencing the worst day of my life. It just wasn’t fair.

I would have to go through labour and delivery. I was given meds to help dilate my cervix. This medicine would be administered every six hours in a cycle of three. I lay in the bed with my hubby and mom by my side. Six hours passed, no progress…next course. Six hours passed, no progress…next course. Six hours passed, 1 cm dilated. I would have to wait another six hours before the next cycle would start. We stayed in that room for a day with no progress. I tried to sleep, I couldn’t. I could feel Madison moving less and less.  I knew she was stressed. I could feel it. I prayed and prayed and prayed. That’s all I could do in that situation. I rubbed my belly and spoke to her. I told her how much we loved her. How much we adored her.  I said how sorry we were that things worked out this way. I pleaded with God to take her quickly and hold her in his arms until I could be with her one day. It was a heart wrenching and traumatic time.

The next cycle of meds was started. Six hours later…2 cm dilated. Next six hours…still 2cm dilated. Dr M. informed us that it was not working. We would have to make another decision; to have a caesarian section or to come back on Monday. I couldn’t live like this any longer so we opted for the caesarian section.  We were given the choice of holding Madison when she was born. We said no. That is my only regret. We also asked for me to be completely knocked out for the procedure.  I wouldn’t be able to lay there. I was too terrified.  I was wheeled in at about 23:45 and came out an hour later. I felt my tummy. She was gone.  I was in severe pain but that paled in comparison to the pain I felt in my heart.  We were supposed to be first time parents. We were not supposed to be here.  We were not supposed to say goodbye to our daughter. We were not supposed to sign her death certificate or sign the cremation papers. It wasn’t meant to be this way.

I spent two days in hospital and was sent home. I was healing physically but emotional healing was going to be a long and hard journey.  Anger was a dominant emotion for a very long time. I was angry with everyone around me. They just carried on with life and my life had come to a standstill. I was angry with those who never said a word about what had happened. Not even “I’m sorry.”  I `chose to delete certain “friends” and I pushed away family members that showed no interest in our loss. I didn’t want people in my life that would not recognize Madison’s life. And I couldn’t be around people who expected me to be the same, carefree person I was. It was impossible. I was angry with pregnant women. I couldn’t stand them. I would never wish this nightmare on anyone, but to me it was unfair that they got to have their perfect babies and I didn’t. Pregnancy announcements were (and sometimes still are) a huge trigger for me and I would spend hours crying. I was angry every time I heard unhelpful sayings like “everything happens for a reason” or “it’s for the best.” I was very, very angry. I didn’t know who I was anymore. Things that were important to me before seemed so meaningless and I couldn’t engage in conversation about materialistic possessions. It seemed so pointless and self- indulgent. I lost all interest in social interaction. I just wanted to stay home with my husband.  I was so very sad and cried all the time. I decided to go on anti-depressants. That was the best decision for me. I needed help. I was a lost soul. I needed to find sunshine in my life again.

Twenty months later, the anger is (mostly) gone and I have happiness in my life again. I am able to experience the joy in life again.  I know who my real friends and family are. And I cherish those people. I have the best husband in the world. I would never have survived without him. He really is my knight in shining armour. I have made some amazing online friends who have had similar experiences and they truly “get it.” They enrich my life. But most importantly of all, I am able to celebrate my Madison- Lee’s life, not only mourn it. I miss my daughter terribly and I still have bad days and experience triggers but I am able to think of her with happy thoughts, and even though she was in our lives for a short while, she has forever changed our hearts and we are grateful to be her parents.  She will never be forgotten. She will always be our first born and an older sister to her future siblings.

We love you Madison-Lee! Not a day goes by that I don’t miss you!

“I will never stop grieving because I will never stop loving” – by Carly Marie