I would like to tell you the story of how my now 5 month old baby beat the odds.
Jeanri was born 18 May 2017, she weighed 3.2kg and had an APGAR score of 9/10 and 10/10.
After birth she was cold so they took her to an incubator where she was supposed to get her temp up, after about two hours she started grunting and having breathing difficulty. There was no NICU bed available so we had to wait for an ambulance to arrive.
The ambulance and the available bed came at the same time, so we chose to take her to the bed as she has been having difficulty for about four hours without any help. They hooked her up to a C-pap machine but it did not work so they had to intubate her.
She was intubated for 3 days when they decided to try and extubate her, needless to say she had a relapse and had to be reintubated. She contracted all kinds of infections including neonatal jaundice an it came back twice!
One week old the ENT took her theatre so they can see if there is an obstruction in her throat that is blocking her airway. The dr came back and said she has stenosis and paralyzed vocal cords. They dilated her throat and they put in a tracheostomy.
All was well, she was breathing on her own through the tracheostomy, the doctor wanted to wait for the swelling to go down so they can take her back to theatre. She was doing so well and the antibiotics was kicking some serious infection butt.
Two weeks old she was taken to theatre again, they came back and told us that the stenosis has improved they only needed to dilate a bit more. She seemed out of it but we took it as she is still under drugs. The doctors did not seem to be worried so we naturally were not either.
03:16 the following morning I received a phone call from the hospital. I never felt so scared to answer my phone, the doctor just said "don't stress, she is okay but you need to come". Since I have a 3 year old and can't just pack up and go (and I was too scared to be honest) I asked my husband to go.
She desaturated, no heartbeat, no life in her. She was a greyish colour and had to be recused :(
Later that morning when I went to see her the doctor called me to have a talk, she sat in front of me telling me what happened. Her words were like knives through my heart. She said when she arrived at the hospital she was already "gone". She said she tried to resusbut had given up. There was another sister on duty that refused to give up and was encouraging to doctor to continue.
She came back to life! Her heart started beating and she started breathing. They had to take out the tracheostomy tube and reintubate her. They tried to calm her heart down as the rate was way too high. They decided the next day to transfer us to a more specialised hospital.
Upon arrival the doctor was shocked at her state, they rushed her off again and she was stabilised. She had to be reintubated AGAIN due to the tube being too small, she needed a bigger one. She had a convulsion a few minutes after she arrived so they had to call the Neurologist, she ordered some MRI and EEG scans. A cardiologist was also called in because of her heart rate that was so high, he also did some scans and tests. She was full of needles and pipes, machines everywhere!
Later the results came back, she has 2 cysts in her brain and this will effect her one side to be weaker than the other side of her body. They also said her eyesight will be affected and that she has epilepsy. The cardiologist came back and said that the one heart wall is too thick but it may be caused due to infections.
Three weeks old she was taken to theatre by the new ENT, he found granulomas in her throat that was blocking her airway so he cut them all out, he also noticed the paralyzed vocal cords. They came back with the news that due to the cords being paralyzed she will not be able to speak. They will be able to do an operation when she is older but she will never sound "normal".
She was doing good for about 2 days and then she just did not want to wake up anymore. They did some more blood work to see if the medication is too strong but all came back clear. She was sleepy for about a whole week. She would open her eyes, roll them and just go back to sleep.
Monday I went to see her and when I walked in she was looking at me with the biggest pair of blue eyes and she was kicking and moving... She just woke up as if nothing happened. They even had to tie her hands together as she was pulling the pipes and drips out. I phoned my mother to tell her the good news and she just said yes I know. Sunday in church the pastor told her that god moved a mountain for us. AND HE SURE DID!
They slowly started removing the machines and she was doing very well. 3 days before we were discharged they had to put in a feeding tube as she could not suck and swallow (she still can't) So she went to theatre for that.
After discharge we came back home and she was horrible! she would cry for 4-6 hours, non stop. We could not understand what was going on. She was not keeping any milk down and actually started losing weight. We took her back and they did another EEG that showed her brain is irritated.
We has her admitted again on the 30 Aug - 02 Sept for a sleep study and another EEG. She was taken to theatre so they can put in a new feeding tube (MIKI).
With our last follow up appointment the Neurologist was very happy with her. Her brain waves has picked up a lot and she called it a "massive improvement" The neurologist wants us to go to a rehab so she can improve to a point where she will be able to be more mobile and they can teach her to suck and swallow.
The doctors told us that she will not come home without oxygen machines, she will not see, she will not have a voice, she will have fits, she will stop breathing, she will be weak on her one side, she will generally not be 'normal'
Our baby beat all those odds, she does not have any oxygen machine, she can see perfectly, she has a voice loader than most babies (personal opinion), she has not had any fits, she does not stop breathing and she is equally strong on both sides of her body. I have a 'normal baby' she just needs the rehab to be the best she can be. We need to remove this feeding tube as she really does not like eating through it. She will scream and scratch, just fight you through the whole feed. The longer we take to get her help the tougher it will be to get her to suck and swallow and gain head control.
Our medical aid is depleted and they do not cover rehab. The rehab hospital sent me a quotation of R450 000. We are desperate for help. Our beautiful baby needs all the help she can get.