Lost

Li-yah

Wednesday, 12 April 2006

Our baby girl Li-yah Dyami Hapai (which means when the sun rises in the meadow, an eagle soars) was born at 23 weeks and 6 days on the 12th of April 2006. She died in my and my husband Carl’s arms 10 hours later.

The post-mortem said she died from extreme prematurity, secondary to a massive and overwhelming e-coli infection.

I didn’t know this at the time, but I have a rare genetic disorder called Ehlers-Danlos Syndrome. It is caused by a chromosomal fault that means collagen doesn’t form properly in the body, so the brain, organs and joints are not protected, and muscles and tendons/ligaments are loose and stretch more than normal. Women who have EDS often have problems with pregnancy, including PROM, miscarriages and infertility. So in hindsight it makes a lot more sense now why she died, but in no way whatsoever does it take anything away from the incredibly rude and dismissive way I was treated by the SDHB, and it doesn’t excuse the mistakes they made around managing my and Li’s infection.

After a natural holistic pregnancy and home water birth of my son Dante (who I know now was a miracle baby), I was unable to conceive again and my husband and I began an infertility program using the ovulation-induction drug Clomid.

At this time I was under gynecological care. Our Dr’s treatment was initially problem free, and I conceived Li-yah on my third Clomid cycle.

I kept my midwife from my first pregnancy. This one also proceeded naturally. I was a little underweight (54kg), and suffered from moderate morning sickness. Our family first heard Li’s heartbeat at 10 weeks, strong and early.

My husband and I ran our own music promotion company. On the 21st of January, 2006, we hosted a national DJ at a local night venue. I was 13 weeks pregnant at this stage. I worked on the door that night, taking tickets and assessing intoxication.

At 2am I walked down the driveway to the back of the club to my car with a male friend to get my jacket. At the car we heard a thud, but nightclubs are noisy and we didn’t think anything of it.

We turned back down the driveway, and half-way back I fell over a picnic table that a drunken patron had thrown over a fenced in smoking area at the back of the club. I landed on my hands and stomach over the legs of the table. I grazed my hand but had no other immediate injuries.

We went home to bed. At 5am I woke up to find that I was soaked in blood.

At the hospital they logged it as a threatened miscarriage and not as an accident. This caused huge problems in itself. During my stay in hospital I asked for an ACC form to be filled out but apparently this was never done. The club also delayed reporting the accident until after Li’s death, causing further problems with OSH.

A huge sub-chorionic hematoma (clot) had formed between the bag of waters and my uterus, most likely as a result of my sharp and jolting fall. Because I have EDS, the uterus was more vulnerable than the average woman, hence the biggest hematoma hospital staff had ever seen with a viable pregnancy. A scan two days earlier had been perfect.

I spent weeks in hospital on and off with complete bed rest at home. Li-yah stayed alive.

Our Ob/Gyn Dr didn’t care anymore and just waited for her to die. He made that disgustingly obvious to us on several occasions, and repeatedly refused to source help for my other medical and pregnancy needs. I dropped to 46kg at 4 months pregnant due to the stress of what was happening to me and my precious baby. I asked for a dietary consult. He said it was unnecessary. My nurses had to sneak in protein drinks because he forbade them, saying I didn’t have a weight problem. He stood outside my room and loudly said to hospital staff that he didn’t understand why I was upset as I could always have another baby.

I requested a change in obstetrician.

At 17 weeks bloody water rushed down my legs. Knowing my waters had broken we rushed to the emergency room. My new obstetrician wasn’t on duty, and I had a panic attack when the nurse told me our old Dr was the only ob/gyn there. He walked in and I told him what had happened. I also brought my soaking pyjama pants in with me. I told him that the leaking seemed to have stopped. He checked me with a speculum but didn’t test for amniotic fluid. He attended a scan, which showed my waters had leaked to a dangerous level.

Li-yah was still alive.

He turned around, shrugged and said to me ‘it’s going to die anyway’ and walked out of the room. I was sent home with no treatment, breaking the Ministry of Health and the hospital’s guidelines for dealing with pre 20 weeks Premature Rupture of Membranes, which says antibiotics need to be administered by IV immediately to prevent infection.

A few days later a new scan showed my waters had resealed and the liquor had built back up. My new obstetrician put me on the antibiotic Amoxicillin in case of infection. The strain of e-coli Li-yah and I later contracted was resistant to Amoxicillin based antibiotics.

I think that an infected piece of the rotting clot may have snuck in when my waters burst at 17 weeks and created Li-yah’s infection.

I went into early labour at 23 weeks and was admitted again to the hospital’s maternity ward. I was given anti-labour drugs and steroids for her lungs. This didn’t stop the slow labour process, probably because the infection had already taken hold and was slowly rotting out my bag of water. I also developed mastitis, very unusual before birth and early in the pregnancy. The hospital put me on antibiotics, but the wrong ones, the night before I was sent to the larger specialist maternity unit in Dunedin. NOBODY took blood tests to find out why I was deteriorating so badly.

At Queen Mary in Dunedin they immediately checked for infection and discovered the resistant e-coli. I was put on the right antibiotics but it was too late, I was already in labour.

My waters broke the next evening when I was going to the toilet. Carl had returned to Invercargill for the night and I was alone at the time. The call bell was too far away for me to reach. I was screaming in pain and unable to move as the huge hematoma pressed down to get out, as it had been sitting right above the dilating cervix. The broken waters were green and brown, and I was panicking.

The midwives who were on duty did not understand my level of panic. They helped a little through the night, but I was alone and absolutely freaking out. I really did deserve a dedicated midwife through the night who could comfort me, calm me down and be part of this terrifying journey. Carl managed to make it back to Dunedin a couple of hours before she was born.

Li-yah was born the next morning at 10.30, weighing in at a tiny 590 grams. Suddenly Dr’s and nurses were everywhere, and she was whisked away to the Neonatal Unit, after being born breathing and even crying a little. I got to see her and give her a quick kiss before she was rushed upstairs.

Initially she did well. I went up to see her once they got my issues under control, and she was doing great, they were really surprised. I wanted to stay with her, but I was too sick. I sat by her incubator but ended up passing out and getting whisked back downstairs.

7 hours after she was born, we were called again to the Neonatal unit. Her blood ph and the level of infection were beyond the point of no return. She had already sustained fatal brain damage with the acidic blood. We could pump her blood through a machine but it may not work and if it did she would be a ‘vegetable’. God I hate that word!

We held her in our arms, had her blessed by a Maori elder. We cried, shook, begged the gods to magically make our precious baby better. Of course it didn’t happen.

At last we consented to the doctors giving her a shot of morphine, and turning off her ventilator. I held her mouth to my lips as she drew her last breath.

We kept her in our room until the police came and took her away for an autopsy. That was really hard. While an autopsy was unavoidable under the circumstances, it goes against our Maori beliefs to have the body opened and the placenta sampled. Everything must be returned to the earth. Because the next day was Easter Friday, her body would have laid by itself in the mortuary till the next Monday. Carl swung into action and demanded she be brought back to me. He got Li back 4 minutes before the mortuary closed. I’m so proud of him for that.

I was in emotional shock and also very ill from the E-coli infection that had passed to me in labour. It took us 2 days to get out of hospital and back home. We kept her at home for a week, and held a tangi for her. I dressed her, made her bed, and held her. I wished I could keep her forever. Carl was very concerned that I would totally lose it when I handed her over to the cremator, but I didn’t. I knew she had to go.

Her ashes are in a beautiful tiny wooden chest in our home, with her wee tiny clothes, hats, and the dolls and teddies I bought her. I talk to her every day. I know she watches over me, and my son Dante. He was only 3 when she died. It hurts him a lot that he can’t remember ever seeing her. There was a patch where he was very angry with us that he wasn’t there when she was born. Now he’s 10 he understands that we were in Dunedin and we would have loved for him to be there too, but everything was just crazy.

Li-yah was a precious baby for an infertile couple who had done their best to keep their unborn baby alive against very huge odds. She was also our last child, due to more complications (and poor medical treatment) causing an emergency hysterectomy.

Not long after I started investigating our Dr. I found out his US history & alerted the media. I then found out about Ella, and in the same week Ella’s mum Felicity and I both made a complaint to the Health and Disability Commissioner regarding his treatment of us and our children. The more I uncovered the more horrified I was. Both families went national with our stories.

Complaints by us and others lodged with the hospital regarding the Dr were refuted, denied, covered up. The Dr falsified not only Ella’s circumstances of death, but Li-yah’s as well, providing answers to our complaints which were blatantly incorrect, but the hospital believed him.

The HDC came back to say that in an expert opinion, Li-yah was doomed from the time the clot formed. Since this occurred in the 3 hours following the fall, surely there is no coincidence. Li-yah’s death was the result of an accident that caused me, and therefore her, an injury, which caused an infection which almost killed me and did kill her. It is no accident at any level.

The Doctor said “not me”.

The hospital says nothing ever happened.

We had a perfectly normal, precious, so so SO wanted baby. This never EVER needed to happen.

 

Thanks so much for starting AIM!!!!!!!

Rachael, Carl, and Dante

 

This article was in the Sunday Star Times in 2008. I’m sorry, I can’t remember the date.

Parents Seek Inquest into Death of Baby – A Southland mother wants answers on the death of her baby and the way medical staff treated her,

writes Karen Arnold.

“An Invercargill couple wants an inquest into their baby’s death, saying their doctor, who has faced malpractice suits overseas, failed to properly manage an infection.

Dunedin police never asked a coroner to investigate the death of Rachael and Carl Goldsmith’s daughter, Li-yah, who was born 16 weeks premature and survived just 10 hours.

Last year coroner Trevor Savage found their doctor at the hospital, Enrique Tomeu, not only contributed to the death of another Southland baby during her delivery, but had also ‘sanitized’ his report into what happened.

Tomeu is back in the United States where he had already faced several mal-practice suits before being hired by the Southland District Health Board in 2005. In May 2003 he settled a case in the US for $360,000 and currently he has 4 cases pending.

It was only after Rachael Goldsmith went into labour and was transferred from Southland Hospital to Dunedin that doctors discovered she was suffering from an e-coli infection that affected her unborn baby.

Goldsmith had received fertility treatment from Tomeu who was employed by the SDHB and she was under his care for the greater part of her pregnancy.

She said her pregnancy had been normal until 12 weeks when she had a fall which caused multiple bleeds and risk of miscarriage. Five weeks later her waters broke, and the couple immediately went to Southland Hospital where a scan showed Goldsmith, 23 at the time, had lost amniotic fluid.

The SDHB’s procedure for managing such a loss when the baby is less than 20 weeks gestation includes the administration of antibiotics to help prevent the risk of infection.

But Goldsmith claims she didn’t receive any anti-biotics until more than a week later, when, at her own insistence, she changed doctors. She believes the short course of antibiotics she received then failed to prevent its spread.

The Goldsmith’s complained to the health commissioner, Ron Paterson, who decided to take no action, finding antibiotics were properly prescribed when the infection was discovered.

But Rachael Goldsmith says in light of the coroner’s case findings into Tomeu in the other case, there needs to be a thorough investigation into both the SHDB and his care of her pregnancy.

Her medical notes show that within 24 hours of Li-yah’s death, several senior health board staff approached Goldsmith’s maternal mental health worker in an attempt to gauge her state of mind and whether there was a risk she would approach the media.

“Why was there such concern I would go to the media when no other complaints against Tomeu had been made public?”

The Goldsmith’s also intend to lay a complaint against the SDHB for the way it treated her after Li-yah’s death. They say the health board staff discriminated against her because of her history of mental illness.

For more than a year Goldsmith had to have hospital-administered morphine to relieve chronic pelvic pain. She then began to regularly faint and have seizures. Medical notes show that staff believed Goldsmith may have had an opiate addiction and the fainting and seizures weren’t happening.

“After 3 specialists had read my notes and done nothing, a new locum checked my chart and discovered I was on two drugs that were toxic together – the side effects were fainting and seizures.”

Exploratory surgery showed she had varicose veins wrapped around her ovaries.

Goldsmith was finally admitted for emergency surgery in August last year, but her condition had worsened and she had to have a hysterectomy.

“Our dream of having a child together is over, and I’m only 25.” ”