Lola's story

On 16 March 2004, our seemingly perfect lives fell apart.  We went to our local maternity hospital for our routine 20 week scan and were told that our unborn baby had a serious heart condition.

The week that followed the scan can only be described as an exceptionally emotional, confusing and frightening time as consultants tried to determine the extent of our baby's heart condition and establish what could be done.  At one particularly low point in the week, we had to brace ourselves to the fact that there might not be a baby, something that we found unimaginable.  Further scans and an amniocentesis followed and finally we received light at the end of the tunnel.  Our baby had a serious and complicated heart condition, but it could be repaired at birth with complex surgery.

The next 18 weeks dragged by, the pregnancy was extremely difficult as we were so scared about the birth of our baby and what the future might hold.  We had been advised that surgery would take place at birth, but like everything in life, there were no guarantees.  We received an exceptional level of antenatal care at our maternity hospital and we felt very secure with the help, advice and support that we were getting.

On 18 July 2004, Lola Isabel came into the world two weeks early. She was beautiful and all we wanted to do was hold on to our baby and love her forever. Due to the nature of Lola’s heart condition she had to be transferred to the nearby cardiac centre immediately after birth. Having had an emergency c-section, I was left at the hospital in shock and devastation, whilst Simon was with Lola. We were separated in different hospitals at a time when we so badly needed to be together and fight this battle as a family.

The following morning Lola was prepared for surgery. The operation to repair the Coarctation of the Aorta, widen the transverse arch and fit a PA (pulmonary artery) band to help the VSD (ventricular septal defect) seemed to take forever. When Lola came out of surgery the news wasn’t good. Our surgeon advised us that Lola’s heart condition was far worse than originally thought and we had to prepare ourselves that Lola might not make it through the night.

The next day we met with the surgeon to discuss the fact that the only option was for Lola to go back in to theatre to have the PA band tightened and further repair work to the hypoplastic transverse arch. Before the surgery took place, Lola would require a cardiac catheter – it was hard to believe that in a matter of three days, our new born daughter would have experienced being in theatre and under general anaesthesia three times.

The second operation again seemed to take forever and the hours of uncertainty dragged by. We had discussed the risks associated with putting a small baby under general anaesthesia again in a matter of days, so we really didn’t know how things would go. Eventually Lola was bought back to PICU (paediatric intensive care unit) and thankfully the operation had been far more successful, it was now a case of taking hour by hour, praying that she would get well and be able to come home soon.

Lola spent a total of three and half weeks in intensive care, followed by a further week in the children’s ward. At four and a half weeks old we finally bought our daughter home.

Back at home we fell into a normal routine quickly and with ease. To us Lola was like any other healthy happy baby, the only exception was the fact that she required medication twice a day – a challenge as the oral suspensions tasted dreadful.

We knew that when we took Lola home, further surgery would be required in the future. So despite getting on with our lives, this factor was always hanging over us like a big, black cloud.

In August 2005 Lola went back to the cardiac centre for a cardiac catheter to see how she was coping with her repair work and to also determine when she would require the further surgery.

On 21 October 2005 Lola went into theatre to close the VSD, remove the PA band and also repair a leaking tricuspid valve. Again we were advised of the risks associated with the operation, only this time they were higher as Lola would require open heart surgery, which meant spending a considerable amount of time on bypass.

The operation took 7 long hours but was a great success. Lola was kept in intensive care for two nights, but because she was doing so well and making a good recovery she was transferred to the HDU (high dependency unit) in the children’s ward. Everything went very well, with the only snag being an issue with Lola’s heart rate, which we would have to sit out until it began to fully function and the pacing wires could be removed. Exactly two weeks after the surgery had taken place, Lola came home and we haven’t looked back since.

Despite a very difficult two year period, both hospitals always gave us strength and great confidence. We always remember the fact that Lola’s congenital heart condition was first detected by sonographers prior to her birth therefore we are forever grateful that this occurred and she was able to be monitored during the pregnancy, delivered safely and operated on by such a skilled team.

Lola really is an inspiration to us both and all our friends and family. Every day we are so proud of her, with what she has been through and the recovery she has made. Lola is a loving, fun, and bright little girl, who at times can also be naughty and quite a character!
She is a wonderful big sister to her baby brother Alfie and fills our lives with great joy and love.

Simon and Natalie, 2007