I say first that I have never done anything like this before. Good morning, ladies and gentlemen. Thank you for inviting me to speak to the committee.
Back in March 2007, I discovered that I was expecting a baby. To say that I was shocked would be an understatement. At the time, I was working full-time with Women’s Aid, providing support to children who had come to refuge due to domestic violence. I was also studying part time for a postgraduate diploma in play therapy, so getting pregnant did not feature in my plans.
On 1 April 2007, I was admitted to my local accident and emergency with excruciating pain. After being tested, I was told that I was suffering from an ectopic pregnancy and that the staff believed that I was pregnant with twins, one in the womb and one in the fallopian tube. I remained in hospital over the next few days and, on 4 April, they decided that I needed surgery. During the procedure I lost the baby who was growing in my womb. At discharge I was told that, due to my age and losing a fallopian tube during the procedure, it would become increasing difficult for me to get pregnant.
In June 2007, my husband, my parents and I went on holiday for two weeks. On returning, I discovered that, against all odds, I was once again pregnant. I was now in a position to have my rainbow baby and was very excited and happy.
For many women pregnancy brings various changes in the body but, after the first few weeks, many women flourish and bloom; they glow with the little life that is growing inside them. That never happened to me. From very early on, I had an awful pregnancy. I neither glowed nor flourished, but I had all the conditions that come with pregnancy, including heartburn and morning sickness, although that should be named all-day sickness. I was constantly tired and really struggling with the pregnancy. My treatment was consultant led due to my history, so visits to the local maternity unit were frequent. At the time, I was not only pregnant but due to be married in November 2007.
My ankles had begun to swell at a very early stage in my pregnancy. I developed cholestasis, a body itch that affects everywhere 24/7 and is a sign of possible liver problems during pregnancy. There is no treatment for it.
The swelling in my ankles continued, and it got to the point that I had to wear a size 7 or 8 shoe, when I am normally a size 5. I presented with swelling at the antenatal clinic on numerous occasions but was told that all my conditions were due to my being pregnant. They would always check baby’s heartbeat, and I received more ultrasounds than normal, but all of that was to check how my beautiful baby was doing. Never at any point did anyone think to check me.
During the last few months of pregnancy, I was struggling more and more every day. I still had severe swelling. I had trouble lying down and sleeping, so I had to prop myself up with pillows. I went to see my general practitioner as I felt that I had a chest infection and was given antibiotics. I had a cough and noisy breathing. It got so bad that I used my husband’s inhaler to try and get a breath. I was really struggling.
At 10 pm on 27 March 2008, I went into labour, one week early. My baby was born at 10.01 on Friday 28 March. Soon after having my baby, I developed a sharp pain in my back, and I could not continue to hold my newborn. I asked my mum to take him. The nurses came over, and it was at that point that they knew something was not right.
For the next three hours I was sick, with extremely high blood pressure causing pain in my head. At that point, the staff were talking about many possibilities that could be the cause of my deterioration: pre-eclampsia, HELLP—haemolysis, elevated liver enzymes and low platelet count—syndrome or a blood clot. After many tests over the next few hours, they decided to move me to coronary care as they suspected that I had suffered a cardiac episode. Having given birth to my angel 12 hours earlier, I was transferred and I had to leave my baby with the midwives at the special care unit. In the morning, a cardiologist told me that they believed that I had developed postpartum cardiomyopathy,
Peri or postpartum cardiomyopathy is a form of dilated cardiomyopathy that is described as a deterioration in cardiac function. It typically presents in the last few months of pregnancy and up to six months afterwards. It normally causes a decrease of the left ventricular ejection fraction, which results in the heart muscle not being able to contract forcefully enough to pump adequate amounts of blood to vital organs, leading to arrhythmias, blockage of a blood vessel by blood clots and, in some cases, sudden cardiac death.
PPCM is a diagnosis of exclusion where mothers have no prior history of heart disease and there is no other known possible cause of heart failure. Unfortunately, many doctors dismiss the early symptoms because they appear to be typical of normal pregnancy, yet early detection and treatment are critical to the patient. Delays in diagnosis and treatment are associated with increased deaths in new mothers. Many women will present with evidence of having a clot that is passing between the heart and other vital organs causing complications such as stroke, the blockage of an artery or sometimes a heart attack. That is why, during pregnancy, doctors should always hold high suspicions of PPCM in any peri or postpartum patient where persistent or unexplained symptoms occur.
One of the most effective ways to diagnose PPCM is a BNP—B-type natriuretic peptide—blood test. BNP is a naturally occurring signalling hormone in the blood that is produced by the human heart muscle. Anything that increases mechanical stress in the heart or irritates the heart muscle will trigger the heart’s pressure receptors to release BNP into the blood. Although increased BNP does not always signify heart failure and should never be used in isolation, it is a very effective indicator that other avenues need to be looked at. That can include an ECG. In other countries, an early-detection checklist is used as a point scoring tool, and that, too, can be used in early detection when women present with unexplained symptoms.
A quarter to a third of PPCM patients are young women who have given birth for the first time. It is thought that one pregnant woman in every 1,300 will develop PPCM. Today, I am not here for me; it is too late for me. I cannot have any more children, but I have two beautiful nieces who will, I hope, become mums one day. Every one of us here today has a daughter, sister, friend or niece who has the potential of becoming pregnant. Please do not let them experience what I did.
After moving on to coronary care, I did not see my son for 12 days. During that time, he became unwell with a choanal atresium, which is extra bone growing over a nostril, so he could not breathe properly. At one point, staff were looking to transfer him to the children’s hospital. As a mum, that broke my heart. I missed out on so much during the early time. The bonding between mother and child is special and it can never be replaced. My son was almost three weeks old before I got to take him home. Do not let other young mums experience that situation.
Having PPCM left me tired and underweight and I found it difficult to care not only for myself but for my son. Now, eight years down the line, I still take medication. Surely early detection is a must, and we must consider the possibility of being able to diagnose PPCM early and effectively. I have with me a checklist that is used when people appear at their doctor’s surgery.