Gabriella — God is My Strength
Our little girl was born at 34 weeks. But 17 weeks earlier we found out that she was a girl. And then, a few moments later, to our surprise we found out she has a serious heart condition, Hypo Plastic Right Heart Syndrome. A few weeks later a more specific diagnosis was given, “Tricuspid atresia.” which is a condition 5 in 100 000 babies.
At a point something with the first ten weeks of her life while her heart was forming, changing into its four chambered configuration, the valve connecting the right atrium to the right ventricle which feeds the lungs, did not form. With no path for the blood to flow a lesion in the septum formed between the left and right ventricles (Ventricular Septal Defect) and left and right atriums (Atrial Septal Defect). This would allow blood to flow to the lungs but without medical attention Gabriella would die, probably within the first two weeks. It is a very serious condition and there is no cure. The best doctors can do is to bypass the broken side of the heart which happens through three operations, in the first 2 weeks, then three to four months and finally the procedure called the “fontan” is completed at age three to four years. Outcomes vary.
The first paediatric cardiologist seemed to be pointing us towards abortion. This we never considered and when we got home we decided to name her. She was a person, we wanted to acknowledge that. We decided to name her Gabriella, which means “God is my strength”, or “Our strength is the Lord’s.” We wanted to acknowledge that all the strength we have is the Lord’s and the strength we commonly take as our own is not. If we are lucky and live to a good old age we will die when “our” strength fails us.
We also know that God has her. He will care for her. He has her in His hand, He died for her, no power can take her from him. The only thing that will separate her from His love is if she lives long enough to reject him. We prayed to God to heal her, we prayed for God to give the doctor’s the wisdom they needed to give her the best life she can have on this earth. We prayed God would use her story to bring more people to Him. We know God will heal her, it may be now or in the new creation, we hope for now. But ultimately we don’t want to see her suffer. We don’t want to suffer seeing her go through this long path. But we acknowledge that we are made for eternity and that while we don’t KNOW why these things happen, that God has it all under control. We trust Jesus has her safe and secure, her body will be whole again.
The pregnancy was difficult. My wife Monique was amazing through it all. During weeks 5 to 15, especially 5 to 12 she suffered severe hyperemesis (life threatening persistent vomiting affecting 1% of pregnant woman). She was hospitalised to hydrate via a drip and lost 7 kg is 7 weeks (15% of body weight) despite being put on the highest dose of Zofran, a powerful medication used primarily for patients on chemo therapy to treat prevent nausea. Despite being on this medication she could barely eat and drink. Sitting up was difficult. Then during weeks 30 to 33 she became very uncomfortable. One Monday we found out why. She woke up with incredible pain in her back. She was completely unable to move.
Eventually we called an ambulance to take her to the hospital. She had an MRI which suggested the spinal damage was not too severe but the disc had degraded badly. She was put on nerve medication and physio while in the hospital, trying to stabilise her. A spinal block was planned. During this time our Obstetrician Dr. Pillay was caring for Monique. Coordinating with the other specialists and keeping a close eye on Gabriella. On Thursday morning I got a call to say Monique had become unresponsive and was being moved to ICU. I rushed to the hospital. The nursing staff were setting her up, but her vitals looked terrible. I was calling people and crying.
Then I panicked. Her blood pressure dropped from an already low number. I don’t remember exactly but about 90 over 50 to 55 over 33. Fortunately just then the ICU physician came. Dr. Ray was amazing. She just took charge. Even though things were looking bad I finally felt Monique was getting the right care. In a few minutes Dr. Ray had her stabilised. Dr. Ray said that the cause was not valium as the reversal agent would work almost immediately. She said it may be the nerve medication but they needed to check for stroke. A CT scan was done which fortunately came back negative.
It was as this time Monique started saying a few words. She would whisper, “Jesus” to me. Then she would become unresponsive again. At about 14:00 some more bad news. Dr. Pillay the obstetrician spoke to me and said they picked up a sustained deceleration of Gabriella’s heart. It was stable again but Gabriella would have to delivered. She was 34 weeks exactly. Hearing this it drew Monique out, she started saying, “No!, No!” Gradually she became fully responsive.
Now Gabriella was supposed to be born at a hospital that had a paediatric cardiology unit. Dr. Pillay arranged for the Dr. Harrisberg the paediatric cardiologist to come over for the delivery and the head of neonatal unit was part of the delivery team.
One beautiful memory I will always have was seeing Monique sing to Gabriella as she was delivered. (She sang ‘God will make a way’, ‘Bless the Lord Oh my soul’ and from our wedding ‘Joyful Joyful’. ) This very healthy looking, crying little girl was born weighing 2.3 kg on March 9, 2017. Dr. Greeff the paediatrician said everything looked very good.
She was taken to the neonatal unit for premature babies and received excellent care from loving staff. Her condition was confirmed but she had a problem of too much blood going to her lungs. Fortunately this meant she would need a pulmonary band rather than a shunt.
In the time being Monique’s disc was deteriorating. She was loosing feeling in her thigh and toes and she was loosing strength as well. Eight days after being admitted she had a laminectomy which was successful. Her damaged nerves are still healing but she is making progress. Throughout her ordeal in hospital, with such intense pain, two surgeries, she stayed such a lady and so gracious. She is truly beautiful.
Gabriella’s first surgery was successful and on week 39, gestation age, she was discharged from hospital. Amazingly this premature baby, with a serious heart condition who suffered collapsed lungs post surgery was thriving. She continues to grow and put weight on. She is strong and beautiful. Just like her mommy.
We are dreading her next surgery. We pray for healing. But we are thankful God has given her to us. We know that He has her. She is safe. We trust God. We just ask to keep her as long as possible.
During all this so many people have being praying. This prayer is really, really, appreciated. We know it makes a difference. We know it is good and right. That God does hear his people. I still feel God will heal her. That may just be “denial.” Even if her healing won’t be complete I am so thankful for this time with my daughter. And to see my wife with her. She looks as strong and healthy as any newborn. We are so proud of her.
Our beautiful Gabriella, who has already shown us that God is in control, and that the Lord is our strength. We have none of our own. Thank you Lord.