The family of a small baby with a serious heart defect is asking for assistance to help them pay for surgery that could save her life.
Three months ago the lives of the Lubbe family from Gonubie, East London, changed forever with the arrival of their beautiful baby girl, Lorelai Mathilda (meaning warrior) Lubbe.
As parents, mum, Dominique Lubbe (21), and dad, Morne Lubbe (27), eagerly anticipated meeting their healthy baby girl. Little did they know that from her first breath, she would require medical support and intervention. As new parents, they couldn’t yet grasp the challenging road that lay ahead for their warrior daughter.
Lorelai has pulmonary atresia, a rare heart defect that affects 1 in 10,000 babies. This condition occurs when the pulmonary valve doesn’t develop, preventing blood from flowing from the heart to the lungs to get oxygen.
Additionally, Lorelai has a ventricular septal defect (VSD), meaning there’s a hole in the wall between her heart’s lower chambers. The prognosis for babies with pulmonary atresia is daunting, with an 80% mortality rate by their first birthday.
The diagnosis was never picked up in utero, so when Lorelai was born via emergency C-section, it was only then that the doctors and her parents found out.
"We were absolutely shattered, it was so unexpected. It felt like everything was going wrong. The day before we were so excited to meet our first baby after a long pregnancy. Then I had an emergency C-section from a failed induction and then the doctors came in and told us they had bad news. We went cold all over. I couldn't breathe.
“The days that followed were so difficult – not going home with your baby, questioning if it is your fault and the doctors saying there is nothing I could have done as a mom to prevent this, that it is just a bad draw of cards. It just gets harder and harder visiting and seeing our baby in hospital, her not knowing the beautiful room we've made for her at home. Her bull terrier sister is waiting at home. Our family wanted to meet her. We'd do anything to have her home with us,” said an emotional Dominique.
Lorelai's congenital heart defect is terminal if not addressed as her underdeveloped pulmonary arteries prevent normal breathing and result in very low oxygen levels in her blood. Lorelai and Dominique were airlifted from East London to Sunninghill Hospital in Rivonia, Johannesburg, where the Maboneng Heart and Lung Institute specialises in complex open-heart surgeries for babies. The institute also has the advanced CT echo scan resources necessary for detailed diagnosis.
Lorelai requires complex open-heart surgery for a full heart repair, and she will need multiple surgeries throughout her life to replace the conduits (artificial arteries) as she grows. Her family urgently travelled to Johannesburg, carrying many prayers in their hearts, for the expertise at Sunninghill Hospital. Despite their efforts to prepare for a healthy baby, Lorelai's parents now face overwhelming medical expenses as Sunninghill Hospital is out of their medical aid network, making the additional costs and co-payments beyond their means.
“Lorelai is currently fighting an infection from her central line (IV). They have to give her medication through that line to keep her patent ductus open artificially. But, the medication has severe side effects, including bone pain, and the other Lasix medication causes hearing loss, so she faces many challenges every day. But the sooner she can get her operation, the sooner they can get her off the Lasix and Prostin medication. She is just fighting an infection again,” explained Dominique.
Lorelai, being the warrior that she is, has already fought so hard to be here every day. She deserves the chance to live a full and healthy life. Currently, she rests in her little glass box at Sunninghill Hospital, awaiting her surgery.
“Lorelai is defying all odds every day. They said she would never pick up weight and yet she has; on a daily basis, she fights to be with us. Her middle name, Mathilda, means mighty in battle. She is in a mighty battle with her imperfection and we can't fight the fight for her but we are doing everything we can to fight with her every day by being at the hospital every day, sitting with her from morning until night, reading to her, talking to her, praying for her. She is a miracle child,” said Dominique
To alleviate the financial burden bearing down on them, the family has started a BackaBuddy crowdfunding campaign where they have already raised over R24 000 of their R1 000 000 goal with the help of 39 amazing donors. The family humbly asks and prays for any donations to contribute to Lorelai’s life-saving surgery.
“We don't know what we would do without the help of BackaBuddy. They provided us with a platform for Lorelai’s funding, and we are really thankful. We have medical aid, but we face extreme out-of-pocket fees because this hospital is not a network hospital. With this extra help, we can afford to pay the doctors and staff, and for tests that are saving Lorelai’s life. Not just that, it also helps us to be with her every day. Every cent helps in the huge ocean of money required to keep her stable so that she can come home after her operation.
“We are so grateful that our donors have added a new stitch to Lorelai’s heart. Every cent gets her the help she needs. As parents and as a family it breaks our heart that we can't provide her with the finances to afford her operation, so we as parents and as a family are eternally grateful for her heart warrior donors that are helping us with finances that we as parents can't do on our own. We thank our donors, who are angels in disguise, and heart warriors fighting with Lorelai. We see every donation and any bit of assistance as a gift from our mighty God above,” said Morne.