Our first child, Divan, was born out of wedlock and we got married when he was a year old. My husband, Nico, is however, the love of my life and we were in a long-standing, committed relationship but the pregnancy was unplanned. These circumstances put a lot of strain on the first pregnancy. When I fell pregnant with Lehan, our second child, it came along with a lot of excitement and we enjoyed the time expecting him so much more, looking forward to the baby.
Expecting baby Divan, out first born, at about 12 weeks into the pregnancy tests for Down syndrome came back positive with quit a high count, more than 700 and it was supposed to be no more than 150. Chorionic villus sampling (CVS) is a diagnostic test that can identify Down syndrome. In CVS, cells are taken from the placenta and used to analyse the foetal chromosomes. This test is typically performed in the first trimester, between 10 and 13 weeks of pregnancy. The doctor suggested a foetal assessment to enable us early enough to decide about ending the pregnancy. In spite of the results of all the tests, we decided to leave everything up to God. We prayed and fasted, trusting God for the outcome. A fellow believer, colleague of mine, anointed me and, along with many others, prayed and stood in faith with us for the health and well-being of our child. This was hard to deal with, every scan was nerve wrecking and the Down syndrome count remind high until the end. Only at birth could we know for sure that our son was normal and healthy. At first the doctor thought that the baby was a little girl, until the first scan after I was anointed and prayed for. Suddenly the doctor confirmed that it was a baby boy. That to me felt like a confirmation of healing, in spite of all the negative test results. We consider this child being born perfectly healthy our first miracle from God.
My second pregnancy with Lehan was pure joy, I was relaxed and we were just looking forward to the birth of our child. Compared to all the worry and stress before every scan during my first pregnancy, this was bliss. At birth, only a week early, weighing a healthy 4.1kg, it was discovered that Lehan’s lungs were not fully developed and he was immediately placed into NICU where he stayed for 2 weeks. We spent that time in prayer, again accepting this test of our faith and trusting God for the healing of our child. After 2 weeks he came home and we thought that was it. We enjoyed him for the first 3 months but all along something was bothering me. Before he was born I had a vision of an empty crib, which left me feeling sad. Initially I thought that it referred to the first 2 weeks that he spent in NICU, that God was preparing me for that. Lehan was a dream baby, never crying, feeding well and sleeping a lot. The excessive sleeping bothered me and at three months old he became very lethargic and had an attack of sorts. His eyes turned back in his head and he started shaking. We immediately took him to hospital where the staff and doctors did every possible kind of test, including a lumbar puncture (spinal tap) in his back, unable to figure out what was wrong.
Eventually a MRI scan was performed because he lost his feeding reflex in the hospital. At that time brain damage was discovered, a scar in the brain tissue, similar to a child who may have drowned, were severely shaken or may have stopped breathing for some time, causing a lack of oxygen to the brain.
The white marks on this scan clearly showed the damage to Lehan’s brain.
At the time our only conclusion was that he may have stopped breathing sometime during the night but then started again for some reason. Dr LP Malan, the Pediatrician, referred us to Dr Lippert, a Neurologist for further assessment of Lehan’s brain. Unfortunately Dr Lippert was unavailable for more than a week and Lehan stayed in NICU for the time being. Dr Malan again confirmed the brain damage and said that miracles do happen but full recovery was highly unlikely. We prayed, fasted and trusted God for a miracle. We anointed Lehan and constantly prayed blessings over him. A prayer chain was started and people from all over the country joined us in praying for his recovery. Standing outside his room, we partook in Holy Communion, constantly believing and trusting God for the well-being of our son.
During that week we thought he may be suffering from the same disease that my cousin has, Propionic acidemia, as he showed some of the symptoms. This is an inherited disorder in which the body is unable to process certain parts of proteins and lipids (fats) properly. This leads to an abnormal build-up of particular acids in the body.
This was a very taxing and long two weeks, waiting to know what the outcome of the second MRI scan would be. After this second scan we were informed that there was no sign of any damage to Lehan’s brain and that the scan came back completely normal! Again God showed us what He can do for us and this was our second miracle child, being healed by God. Although we had to wait to weeks for Dr Lippert, Lehan’s healing happened from the one day to the next. On the day that the brain damage was discovered I could see that there was no recognition in his eyes, he could not feed on his own and was non responsive.
After getting the prayer chain going and when we returned to the hospital the next day, I could see the difference – he was smiling, could feed on his own, there was life in his little eyes and he was back to his old self again.
His healing was only confirmed two weeks later when the second scan was performed and no damage to his brain could be found.
On this scan there is no sign of any brain damage.
While waiting for the second scan, Lehan was diagnosed with Propionic acidemia. This is a very difficult illness to deal with but when we discovered that there was no sign of brain damage, it gave us more courage to deal with the challenges that we knew waited for us as a family. (Children suffering from this disease are very susceptible to brain damage and the fact that Lehan has no brain damage is a miracle!) The fact that my cousin suffers from the same disease meant that his family could lend us a hand of support and could give a lot of advice about the illness. The fact that we knew about my cousin’s illness meant that Lehan’s diagnosis was easily discovered, which was a blessing in itself. This was the good that comes out of bad situations, as God promises us as believers.
As a result Lehan has to use a lot of medication, including Sodium Benzoate and L-Carnatin. Three times daily I have to add Sodium Benzoate to his milk formula, also a very specific kind of milk, MMA which is extremely expensive. If not, this burns the inside of his mouth, leaving him with painful sores in his mouth. L-Carnatin brakes down as much of the protein as possible, enabling his body to cope. In spite of this gradually protein accumulates in his body, which is toxic to Lehan. Ammoniac also gathers in his body and weekly blood tests are required to monitor this. The normal level is 50, if higher than 80, we need to take him to hospital. Every few weeks he needs a drip to clear away all these build-ups. The original attack at three months was because of the gradual build-up of protein from the breast milk, which is low in protein but still caused a problem after three months.
Another side effect of Propionic acidemia is that these babies are only able to sit by themselves at about the age of one year old. This is because of their necks not stiffening sufficiently at an earlier age. At the age of only six months old Lehan is sitting on his own. During his first visit to an Occupational Therapist she said that his developmental milestones are only slightly lagging, with about a month, which can easily be rectified with therapy. Another part of our miracle from God!
Contrary to what is to be expected, Lehan drinks his milk and eats solid food. This disease should cause a lack of appetite of which there is no sign in this case. We are discovering so many ways in which Lehan is absolutely normal and does not show the sign and challenges expected from this disease, again part of our miracle healing.
We are going to have Lehan tested again, praying for complete healing. The past six months filled with bi-weekly hospital visits, already 3 MRI scans at his age and so many more challenges, as well as the expected short life-span of only three years is not the life that God wants for our family. We are again trusting God for miracles and complete healing of our son. My husband, Nico, believes that God answered our prayers and healed Lehan’s brain damage to prove to us that he wants to and can heal our son.
A prayer vigil was held by family and friends to pray for Lehan’s complete healing.