This is the story about my little Angel from God.
My baby was born on a Thursday morning 9:10 – she was absolutely gorgeous, her doctors checked her out and said she was 100%. I was a first time mother and tried to breast feed my baby girl, but it wasn’t very easy owing to the fact that I didn’t know how much my baby was getting in and all of that. On the Saturday we were signed out of hospital and an old doctor came to check her out. I just had a gut feeling something was wrong with my little girl, but the doctor said it’s just my imagination.
Esperanza came home and she was such a good baby, she slept the whole time and rarely cried. As I said before I was trying to breast feed her, but she didn’t get much in, as I found later. When Esperanza was 6 days old she started breathing very rapidly during the night. I phoned the maternity department and they told me that I should put some salex in her nose. I tried that all night long but my baby was just flat and battled to breathe. My husband left for work that morning at about 6:30 and I decided to rather take her to the ER to have her looked at.
When we got there I was in for the shock of my life. My baby was completely dehydrated and she went into a coma. She also lost a whole lot of weight, when we left the hospital she was weighing about 3 kg, but when we went back she was only 2 kg – she lost an entire kilogram. The doctors didn’t have much hope for my darling little girl. They did so many tests, more than I even want to think about, she was probed and prodded until eventually her doctor decided to do a metabolic screening test at 9 days of age. He also did a blood ammonia analysis which came back as 316, with normal ranging between 35-58, if I remember correctly. We got the tests back from Potch and it was confirmed my baby had Propionic Acidemia. It was as if we got a death sentence, her doctor told me he doesn’t think she will make it past 3 months of age. We were in NICU for 39 days trying to get Esperanza to gain weight and trying to get her to drink. She needed to be fed special food that was very expensive and tasted like battery acid. We had so many doctors and dieticians trying to help us and finally we went home after 39 days with a very small baby that needed so much special attention.
My little girl was really battling to drink her bottle, she needed her special milk every 3 hours or she would go into a metabolic crisis and end up back in hospital. It took me 2 hours to give her about 60 ml of milk and as soon as she had the milk down, she would just bring it right up again. Esperanza was in and out of hospital at least 2 times a month. The hospital was like our second home. When I had to go back to work I just could not stand being away from her, there was no way that I could leave this baby with her special needs alone in a hospital room whenever she was sick.
When Esperanza was about 6 months old she was still wearing 0-3 month clothes, she was tiny due to the fact that she never kept in any of the nutrients she needed. We decided against the wishes of her pediatrician, to have a gastrostomy tube placed into my Angel’s tummy. We also wanted to have the placement of the g-tube done together with a Nissan Fandoplication – that’s an anti-reflux operation – but the doctor didn’t want to listen to me. Only a few hours after her feeding tube was inserted, I poured her milk through the tube and it just came running out of her little mouth. A week after that we needed to have the Nissan operation done anyway. I must say to any parent that doesn’t want to do this, please don’t be scared, it really makes your life and the life of your baby much easier. I can go so far as to say it was the best thing we ever did for my little girl.
Esperanza still had her days that she got really sick, but with a propionic acidemia baby, that’s part of life. We tried keeping any children far away from her to try and keep all the bugs away, as she did not have a healthy immune system.
Esperanza had very bad veins – whenever we had to go to hospital there was always a ton of blood tests that needed to be done and obviously they needed to get a drip up, but it always took them at least an hour or two. It broke my heart having to see how my baby was suffering. Esperanza was an absolute little Angel, she loved to listen to CD’s of Christian music. Esperanza’s milestones were all a little delayed due to the fact that she was in hospital at least once a month, and she had a little brain damage. Esperanza was a very happy child and always ready with a smile, it doesn’t matter if she has just been probed and prodded or whatever happened to hurt her, she would always have a smile for her mommy. Esperanza went to a whole lot of speech therapists to try and get her to eat something, it was impossible for me to get her to eat anything. She also went to physiotherapists to try to get her to crawl. Esperanza started walking 2 January 2007, she was almost 20 months old. It was one of the happiest days of my life. She never really talked much, the only words she said was Mamma, Pappa, Oupa and Ouma and Do – that was for her little cousin Riccardo.
Esperanza had a metabolic crisis accompanied by high ketones the last time she went into hospital. Normally I would just give her a couple of shots of 1/2 Darrows and her ketones would go down again, but not this time. I took her in to see her pediatrician but he was on his way to Germany, so we had to see his locum doctor. Esperanza was admitted to the hospital, put on a drip and had a lot of tests done that came back negative – except one, they had found an E. coli in Esperanza’s urine, an infection that probably made its way into bladder from her stools that was always mostly water. I asked around and everyone told me it’s nothing to worry about, but I just had a feeling that it’s not just nothing. If I could give anyone any advice, it would be that if you don’t feel right about what a doctor, nurse or anyone tells you, please just tell them you want a second opinion. Maybe if I had just opened my mouth a bit more my little angel would still be here with me.
Our experience with the life of my little Angel was a hard, but very happy one. I would not exchange what I had with my little girl for anything on earth; she was the best thing that ever happened to me. I really miss my little girl and if there was something that I could do to bring her back I would do it, even if it meant for me to go through ten times worse than we have already gone through, but I know that my little girl is much better off in heaven where she does not have any more pain or worries.
Lots of love
Mariska & Deon van de Venter